Part 37 - The Fight

Continued from Part 36

While Dad was having the emergency CT scan, the ICU nurse told my mom, my sisters, and me that we would have to observe Neutropenic Precautions, meaning we had to scrub, gown, and mask to enter Dad’s room.  OK, I thought, we can do that.  And then she dropped the bomb: she pointed to a sign on the wall that listed visiting hours in the ICU and the one-visitor-at-a-time rule.  Feeling panic rise up in my throat, I told her that Dad was unable even to use the call button to ask for help and that, unlike other patients, he rarely slept.  I told her that he didn't just want us to be there with him, he needed us there, and we needed to be there.  She said the only time they will make exceptions to the rules is when a doctor had written orders to that effect.  After a little more pleading by us, she called and made our case to the stand-in oncologist Dr. M, who agreed to write an order to allow us to stay with Dad around the clock, with up to two of us in the room at a time.

When they brought Dad back from CT, the nurse said he was not allowed to eat or drink anything, but she could not give us a reason.  My sister eventually argued her down on the issue, but in the meantime Dad was cold, thirsty, anxious, and exhausted.  A little while later, Dad started to complain of severe stomach and chest pain, and testing for heart-related problems was kicked into high gear.  WHAT IS GOING ON? we wondered, but we tried our best to keep the fear from our faces as we assured Dad that the doctor was going to figure out what to do to make him feel better soon.  After some additional blood work, Dad was given IV pain medicine, which knocked him out for a couple of hours, during which time my mom, my sisters, and I huddled to revise the schedule so that each of us could be there for as much time as possible around the clock, with at least two of us there at all times.  We were launching into survival mode, for Dad and in some ways for ourselves as well.  

The unit was freezing cold, and when we asked if the temperature in at least our room could be adjusted we were told no.  We kept Dad bundled with extra blankets, and we kept our coats on, at times even wearing gloves and hats in the room too.

To add to our problems and concerns, snow was really coming down outside, and the prediction was for snow and ice to accumulate even more overnight.  Our husbands and children were traveling from out of town, and we were all driving between the hospital and my parents’ house in shifts, at all hours of the day and night.  In addition, we had been so involved with all that was going on at the hospital that none of us had had a chance to get to a grocery store to buy food to have, and, now that night had fallen on Christmas Eve, stores and restaurants were all closed until the day after Christmas.  We were so consumed with the precariousness of the balance of caring for Dad and taking care of everything else that had to be done that we were overwhelmed by logistics, and the icy roads and that lack of sleep and stress that we were all experiencing weren’t helping any.  We ate dinner that night out of the vending machine in the ICU waiting room, taking turns eating and sitting with Dad, so full of worry and sadness that we didn't even acknowledge the crappiness of our Christmas Eve meal.

At the nursing shift change on Christmas Eve, Dad’s new nurse came into his room and introduced herself.  Her name was an unusual one, and, because she thought Dad was asleep, she spoke to us very quietly.  A few minutes after she left the room, Dad opened his eyes and said, “Did she just say her name is Worm?”  We told him no and commented that that would be a really strange thing for someone to have as a name.  Dad, as usual, had a different perspective, and he scolded us by saying, “She can’t help what her parents happened to name her if her name is Worm, and she seems nice.”  Point taken.

Like all of the nurses we encountered on the ICU that weekend, “Worm” was mostly nice and usually efficient but very business-like and not what you would call "warm." At times, it seemed like the nurses on the unit wished that Dad would just go to sleep and that those of us who were extras on the set would exit, stage left.  Like we had the first time Dad was in the ICU around the time of his surgery, we tried to fly low and make nice with the nursing staff, but we weren’t about to have Dad take a hit just for the sake of niceness.  Several times, we had to remind the nursing staff about certain medications that Dad was supposed to be getting on a specific schedule, including the fourth in a series of five shots of the Neupogen that was ordered to be boost his immune system.  Because the temperature in the room was so cold, we had to ask for extra blankets fairly often.  We were the only family members on the unit the majority of the time, and, time and time again, we commented amongst ourselves that if family members weren’t allowed to be there as much as we were with a patient like Dad, in the best case scenario, that person would be neglected at times, and, in the worst case scenario, the patient would be, well, a lot worse off. 

Dad was very uncomfortable and anxious and at least somewhat disoriented during this time.  As had been going on throughout his hospitalization, it seemed like every half hour or so a nurse or technician had to poke or prod him or – the worst for him – tear off a heart monitor lead, medical tape, or a band-aid.  Even just having someone move him to reposition him in the bed, to put a bedpan under him, or to put a thermometer underneath his arm was extremely painful for Dad, and having hair ripped off along with the adhesive was like medieval torture.  He started cringing and even startling whenever someone entered the room in anticipation of the pain any procedure or action might bring.  His stomach continued to hurt, and an anti-ulcer medication was added to the list of things being administered.   And, although we had been told not to adjust Dad’s diet with regard to the blood sugar issue many times by many physicians since Dad had been started on the mega-doses of steroids, suddenly the hospital starting sending diabetic trays for him, some of which were “liquid only.”  Dad was totally disinterested in food of any kind; we fed him ice chips to keep his throat, mouth, and lips moist.  As the hours ticked by into the wee hours of the night, Dad’s frustration and anxiety levels grew; he was very annoyed if anyone made noise or talked around him, and so we started texting each other from one side of his bed to the other to communicate when necessary in the dark, cold room. 

Christmas morning arrived with Dad in exactly the same state as the previous day, if not somewhat worse with regard to pain and despair.  The Infectious Disease doctor came by to report that Dad’s blood work looked “normal” and that she wasn’t sure why his mental status and pain levels weren’t improving.  She wrote an order to discontinue the Fentanyl patch that Dad had for pain in hopes that his confusion would clear up.  Dad alternated between being discouraged and annoyed and kept saying things like, “Why can’t these people just go on?” and “I can’t do anything – I can’t even breathe right!”  It was heartbreaking; it made us want to protect and help him even more, but we had no idea how to do that.

Around noon that day, Dad reported that his stomach, chest, and whole body hurt really badly.  “I’m really worried that I’m not going to make it!" he said.  We hit the call light button, and the nurse came in and gave him pain medicine, after which he didn’t sleep but he told us his pain wasn’t as bad. 

A few minutes later, Dr. M came into the room.  “I’ve got no news for you,” he said right off the bat.  “I’m recommending a feeding tube for nutrition for him.  It’s my guess that he’s got something else going on in the head,” and then he pointed at his own head, as if to emphasize or to clarify his point.  

Wait a damn minute, I thought.  This isn’t some breezy interaction in an elevator!  And HOW DARE you speak about a patient – MY DAD – like he isn’t RIGHT THERE or like he DOESN’T UNDERSTAND what you’re saying about him.  By the time I had processed this, though, the guy had turned on his heel and stepped out of the room.  I looked at my mom and said, “I’ll be right back.”

What happened next is one of my clearest memories from the whole time we were in the hospital, maybe even from the whole time Dad was sick, and MAYBE EVEN from over the course of my whole life.  

Dr. M was at the nurses' station, writing in Dad’s chart. “I need to talk to you about my father,” I told him, using every bit of restraint I could muster.  

“Oh?” he said, looking up from the chart.

“We need some answers and we need some kind of action, some sort of plan. Why is he not getting better, and what do you intend to do to help him?” 

“Look,” he replied, “It’s Christmas Day.”  AS IF THAT WAS NEWS TO ME, AS IF THAT EXPLAINED ANYTHING, AS IF THAT MADE A DIFFERENCE TO MY DAD OR TO MY FAMILY.  I came unglued.

“We are aware of that,” I told him, with tears of fury in my eyes, “but it’s not Christmas to my dad, or to us!  He is miserable, scared, and so sick.  I don’t care what day it is – DO SOMETHING!  It’s YOUR responsibility to do something about it and to take care of him, regardless of what day it is.”  

“I understand,” he said, in what could only have been seen as a very condescending tone.  

“No, you don’t!” I yelled.  “You can’t understand – it’s not your dad in there suffering while no one does anything to help him!”

“Ma’am, I do understand,” he said, “because I have been through cancer myself.  I had prostate cancer several years ago.”  

AS IF, I thought!  “My dad has brain cancer!” I screamed.

He took a step back, and for a moment the unit was completely silent.  I could hear the clock on the wall ticking, and I could feel the eyes of every person in the area on me, but of course I didn’t care.  “I am aware of his diagnosis, Ma’am,” he said, “but I’m not sure you understand the prognosis.”  

“I am very well aware of the prognosis and the facts,” I yelled as I clenched and unclenched my fists.  “What I don’t understand is why you think it’s ok to dismiss him as if there’s no hope, as if he doesn’t matter.”

After several beats of silence, he came back with “Ma'am, he is receiving adequate care.  I know how you feel, but sometimes patients just don’t get better.”  

Oh, no, he didn’t. Quietly, but with great conviction, I told that @&$#% that “adequate care” was not good enough for my dad, that this was not the end of the road for him, that my dad was not going out this way, and that it was his responsibility as a doctor and as a human being to DO SOMETHING to help him.

  

“What exactly do you want me to do?” he asked me.

What I wanted to do was to punch him in the face, but instead I told him, “I want you to figure out what’s going on with my dad.  I want second opinions and consults from every specialty area – cardiology, neurology, neurosurgery, and anybody else that you can think of.  TODAY.”

“It might be hard to get anybody to come in to consult on Christmas Day,” he said, still full of shit waffling.

“Are you saying that there is no one at all in these areas on call today on staff at this hospital?” I demanded.

Finally out of arguments, he acquiesced: he didn’t answer, but he averted his eyes and furiously started scribbling orders in the chart.

I knew I had offended him, and I am well aware of the Be-nice-to-the-waiter-so-he-doesn’t-spit-in-your-drink Rule, but this was literally a matter of life and death.  Christmas or not, my dad, like every patient, deserved the best care available, and I was convinced there were other things that could be done to help him.  Completely entrenched in my role of Daughtering, I was taking no prisoners, and one arrogant doctor was no match for me.  Tool.  With that Smackdown out of the way, things started to move along a little more smoothly during the second half of our tumultuous Christmas Day.

Up Next in Our Story ... Part 38 - A Blue Christmas

Part 36 - ICU 2.0

Continued from Part 35

After a day of ups and downs, the oncologist made his final rounds before the three-day holiday weekend late in the afternoon.  He delivered a pep talk to Dad, who as usual “faked” how he was feeling in front of the doctor (“Doing great, Doc!”), and then the doctor asked us to step out into the hall with him.  I tagged along, and my sister stayed in the room with Dad. 

“I’ve heard from the nurses that he’s mentioned dying a few times,” the oncologist said, “and I just want to be sure before I leave for the weekend that you want the chart to reflect that you want ‘heroic measures’ to be taken should anything drastic happen.”  

Wow, I thought, as I looked at my mom in shock.  OF COURSE we want HEROIC MEASURES, I thought; we want a MIRACLE - we want him to be healthy again!  We want someone to be a hero the way Dad is to us, and if that takes ‘heroic measures,’ then so be it!

“What do YOU think?” Mom asked the doctor.

“At this point, I think he is still recovering from the infection, and I expect him to respond to the treatment for that, after which we can press on with the treatment for the cancer,” he said.  “So I would say we do not want a DNR [Do Not Resuscitate order] in place at this point, but I want to be sure you agree.”

“Yes, we agree,” Mom told him.  “We need more time.”  

Exactly, I thought, and we said goodbye to the oncologist and went back into Dad’s room.  

That evening, the night nurse (unfortunately not Meredith, who had the night off) administered two units of whole blood to Dad; as per the protocol, she gave him IV Benedryl beforehand, and as a result Dad slept soundly for the first part of the transfusion.  After that, though, he was very restless and talkative, although most of what he said was “mumbly,“ as we noted in the Notebook.  He had just gotten back to sleep at 3:45 a.m. when a phlebotomist (whom I referred to in the Notebook at “The Blood Bitch”) burst into the room, abruptly flipped on the ceiling light, and announced loudly that she needed to take blood.  As Dad stirred in the bed, I jumped up, turned the lights back off, and told B.B. that, unless the order had been specifically written for blood to be drawn at that exact time, she needed to come back later.  She retreated and returned again at 7 a.m.

The rest of that day, which was Christmas Eve Day, was a whirlwind of activity, disappointment, and stress for us.  We had quite a string of visitors that morning, and Dad seemed to get more disoriented and more distressed with each person who entered the room.  Shortly after the nurses’ change of shift, the stand-in-oncologist Dr. M came in to introduce himself.  He said that Dad would be getting a transfusion of platelets that day and that he was increasing the insulin dosage due to the increasing blood sugar numbers that had been noted over the past 24 hours.  

Next was a visit from the Physical Therapist, who tried to help Dad turn onto his side in the bed.  It seemed like every movement was not only exhausting but also excruciatingly painful for him, and, after a couple of minutes of listening to and watching Dad groan and grimace in pain, she said, “I want to get him sitting up at the edge of the bed again, but I’m concerned that doing so will agitate him for several hours.”  Looking at the anguish on Dad’s face, Mom asked the P.T. to come back later, and the P.T. agreed to check back that afternoon.

Next through our revolving door was a volunteer with a therapy dog.  Like the rest of my family, Dad loved animals, but he seemed totally disinterested in interacting with this dog, even turning his head away when the volunteer asked if he wanted to pet the dog.  “Thank you anyway, but I really just want to see my own dogs and my cat,” he told her.  

Things continued to spiral downward, with Dad becoming more miserable and with his condition becoming more perilous as the day progressed.  When the nurse started to give Dad a sponge bath, he yelled, “I know you don’t mean to, but you’re really hurting me!  Can’t I please just skip this?”  A little while later, in preparation for the platelet transfusion, she brought in the Benedryl, and two minutes later Dad was snoozing, even sleeping through a shot of 15 units of insulin, which, due to the alarmingly high blood sugar reading, was much larger than the 6 units he had been getting.

Not long after the platelets had been administered, Dad’s blood pressure and blood sugar levels started climbing so rapidly that the decision was made by the stand-in oncologist to transfer him to the ICU.  “There’s just way too much going on with him,” the nurse commented, and, terrified, we agreed.  As the arrangements were being made for the transfer, Dad started hallucinating; he seemed less in pain and more confused and in his own world, which frightened us even more.

Because of the skeletal holiday staffing, the Neuro-ICU was closed, and Dad was assigned to the Cardiac-ICU, or the “CCU.”  When we got the word that we were moving, we hurriedly gathered up our belongings, and Mom pushed a cart with our stuff on it as I speed-walked alongside Dad in the bed, which was rolled down several long hallways by the nurse and a transport aide.  I was worried that the movement of the bed would hurt Dad, but instead he called out “Whee!” each time the bed was rolled across a bump on the floor along the way.  

As soon as we got to the little glassed-in room on the unit, Dad was taken back out for another CT scan ordered by the oncologist due of his worsening condition.  As per the results of the scan a few days before, again no signs of bleeding or inflammation in the brain were seen, which seemed like good news but - with the improvement of his blood count - instead left everyone wondering as to what was going on and what should be done next.  

Up next … Part 37 – The Fight 

Part 35 - Hanging On

Continued from Part 34

On the second day of Dad’s second hospitalization, Dad’s nose and cheeks looked red and swollen, but his neck was a little less swollen, his pain was better controlled, and he was coughing less with the medicine and breathing treatments he had received.  

When the oncologist came by for rounds that morning, he said that he expected “to see a neurological improvement as the infection started to clear,” which he expected would happen "soon, given the spectrum of antibiotics being administered."  He said that he was ordering an MRI for that afternoon and that we should plan for Dad to be in the hospital through the weekend, which meant we would be there on Christmas Day. 

We continued taking turns staying with Dad, with two of us there at a time. For most of the day, he was chatty, but, as my sister noted in the Notebook, his words were “mumbly,” presumably because of how weak he was and possibly linked to the pain medications being administered.  He had taken in very few calories over the past few days, but he kept saying that he wasn’t hungry and he got annoyed when one of us asked him if he would try to eat or drink something.

Late that afternoon after the MRI, he requested and finished off some chicken soup, some ice cream, and a Diet Coke, and a few hours later he ate some mashed potatoes and baked apples.  Each bite he ate gave me a little more hope that he would pull through the raging infection, of which we were still waiting to learn the source.  

Nurse Meredith, aka Angie, was with us again for the 7 p.m. to 7 a.m. night shift that second night.  She and Dad chatted about how much she liked her job and, when she told him that she was from Bowling Green, Kentucky, about how great Corvettes were.  When she commented that she thought he was doing much better than the night before, he nonchalantly said, “Yeah, I was supposed to die last night, but I didn’t so I know I am going to get better.”  We exchanged looks over his head and hoped silently that his prediction was correct.

Some Christmas carolers came by and stood in the hallway just outside the door to our room singing, which got a big smile from Dad.  By bedtime that night, he reported that he didn’t have any pain except for his throat and the bedsore hurting, the latter for which a special air mattress had been brought in for him.  

My sister J and I stayed with Dad that night.  Not long after we had turned the lights off in hopes that it would help him sleep, he got a really frightened look on his face and started gasping for breath.  His heart rate shot up; we called for Meredith, who sprinted down the hall to check on Dad but couldn’t figure out what was going on.  Over and over, Dad told us that he was freezing, and then he started saying things that we didn’t quite understand.  Despite the temperature of the room being warm and several blankets being placed over him in the bed, his teeth were chattering so much that we had to strain to understand him.  “I think I’m dead,” he told the three of us, “and I’m starting to wonder if y’all are dead too.”

We assured him that all of us including him were ok, but he insisted that the reason he was so cold was that he was dead and that he thought we were cold too since we were also dead.  “Is this what it’s like when you’re dead?” he asked. “I don’t want it to be cold!”

And then he said something even more puzzling:  “I see Hattie, Mattie, and little Sally over there – are they cold, too?” 

Wanting so much to help him, we looked at each other with wide, scared eyes.  The three of us were almost lying on top of him trying to warm him up and to calm him down.  After hearing him repeat the list of those three names a few times, it dawned on me that he was naming three dogs that had died years ago, and he was convinced that he could see them. Realizing that neither verbal nor physical comfort measures were not going to be effective in battling the panic and the terror, Meredith raced to get a sedative for Dad, and, five minutes later, he was resting soundly.  

Afterwards, Meredith went back to the nurses’ station, and my sister and I sat in the dark room and watched him sleep.  We didn’t know what to make of the episode or what had caused it to happen.  Dad slept for several hours, but we didn’t – the terror he had been experiencing had been transferred to us.

The oncologist made his rounds before the sun was up on Thursday morning; he brought with him the news that, although slightly improved, Dad’s blood counts were still dangerously low and thus he would be getting a transfusion later in the day.  Unlike his previous proclamation (which I had written down word-for-word in the Notebook) about Dad getting “exponentially better,” he said that recovery for Dad was going to be a roller-coaster ride, with improvements and regressions along the way, especially while we waited on the blood count to come back up.  

And then came the big news: the results of the previous day’s MRI.  Dr. O said that the tumor’s size was "about the same" as a month ago.  Given the extreme aggressiveness of the nature of GBM, that was considered to be very good news; the fact that the tumor hadn't grown was a sign that the treatment was working.  In even better news, fewer "areas of enhancement" had shown up on the MRI. which indicated there were fewer blood vessels going to (or "feeding") the tumor.   

“That is exactly the goal of Avastin,” Dr. O proclaimed, but then he went on to say that Dad would have to continue to stay in the hospital until his blood count improved and that it was too soon to predict the timing for the next dose of Avastin/chemo because that was dependent on the blood count.  He told us that he would be off-duty for the three-day holiday weekend but that another oncologist in his practice, Dr. M, would take over in his absence.  Dr. O listed his goals for Dad for over the long weekend as having an improved blood count, eating more, requiring less pain medication, and getting up in a chair.

“Just hold on until after the transfusion, and you’ll have more energy,” he said.  As he turned to leave the room, Dad, who was so exhausted that he had kept his eyes closed during the entire interaction, piped up with a cheery “Will do, Doc!  Thanks for coming by!”

Right after the doctor left, a physical therapist came by, and, with the help of a staff member named Dave whom my sister and I thought was a nurse, she and I helped Dad sit on the side of the bed, which was scary and totally exhausting for him.  Dad said he felt like he was going to fall, and, despite reassurances from all of us, he held on to our arms with a white-knuckled grip. Just moving from one position to another was a MAJOR effort for him, but, with his “no-pain-no-gain expression” on his face, he did it for about three minutes before he had to lie back on the bed to rest.  

When Meredith’s shift had ended at 7:00 that morning, a nurse named Leah had been assigned to Dad, but for some reason there was a change in staff late that morning.  Leah, although not warm or friendly like Meredith, had seemed efficient; the new nurse Jessica had started off acting just short of what I considered rude.  Of course, it was one thing for someone who was supposed to be taking care of Dad to be brusque with me, my sisters, or our mom, but it was an entirely different story when that impertinence was imposed on Dad.  

Helpful Dave brought ice chips, warm blankets, and Diet Coke for Dad throughout the morning.  Dad, of course, thanked Dave but didn’t notice Jessica’s bitchiness behavior, but we did, and, after several snippy comments from her and a few long delays in responding to fairly simple requests that directly related to the provision of patient care, I told the nursing supervisor that I didn’t think it was a good “match.”  

“We’re short staffed,” she informed me, as if that made the level of care acceptable.  

“What about Dave, the nurse who has been helping the other nurses all day?” I asked.

“Dave is our unit secretary,” she told me curtly.  “Really all I can do is for me myself to provide back up for Jessica as needed for the rest of this shift.”  Um, ok then.

Lunchtime brought some chicken soup for Dad, which he ate with assistance, and also a follow-up visit from the Infectious Disease doctor, who informed us that two “bugs” had been identified in Dad’s blood samples, both of which are typically found on the skin or in the mouth or digestive system of people but which, in a person like Dad with a compromised immune system, can go haywire and result in an infection anywhere in the body, most commonly in the lungs (pneumonia), in the urinary tract, in a wound, or in the throat.  The Infectious Disease doctor said that Dad could have infections in any or all of these and that the source was probably his own body.

Wow, I thought, we have put so much effort into sterilizing everything around him and limiting his contact with the outside world for fear that he would get sick, but the problem actually came from within his own body.  I wasn’t quite sure what to do with that information except to feel even more powerless against what was going on; despite our best efforts, the protective shield that I thought we had put up around him was eroding a little at a time.

Up Next … Part 36 – ICU 2.0