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 16 - Holding On

Continued from Part 15

The uphill climb continued during Dad’s homestretch in rehab; he was counting down the days until he could go home, and so were we. Dad was very bored and frustrated with the therapies and the routine there.  He didn’t see the point of 99% of what was going on in the therapy sessions; he hated that he had to work on simple arm and leg exercises and even just walking with a walker, and so did we.  There was so much unfairness and turmoil, and having to swallow his pride on a daily basis was rough stuff.  When I was there to observe, I noticed that the therapists didn’t explain to Dad why they were having him work on the things that they were, things that seemed far beneath the pre-tumor person that he was.  It’s possible that he wouldn’t have paid attention or remembered or appreciated the explanations had they been forthcoming, but I thought it was a shame that they didn’t even try to make things clearer for Dad.  Dad didn’t see the point of many of the activities; he thought they were a waste of time and childish, and in many cases, I didn’t disagree.  It’s hard to be motivated when you don’t see the point, and the point is much more unclear when a person has suffered a brain injury.

Progress was slow and inconsistent.  I wanted to believe that it was because of the lack of sleep and/or the persistent headaches and pervasive fatigue that Dad suffered from; I wanted to avoid finding out otherwise, although I knew there was a possibility that something much more detrimental and sinister what would eventually be unveiled.  

The uber-early morning wake-ups by the staff continued, as did the seemingly fly-by-the-seat-of-your-pants rulings on how (or if) Dad’s crazily fluctuating blood sugar levels and the headaches should be addressed.  Several days would go by without Dad’s blood sugar level being checked at all, but then a nurse would check it and find it to be abnormally high, after which it would sometimes be treated and sometimes not.   Dad’s eating habits were erratic; he frequently requested sweets and junk food, which was very out of character for him.  We asked the nurses and doctors many times if we should limit the sugar he ate, and each time we were told not to worry about it because the out-of-control numbers were related to the mega-doses of steroids he was having to continue to take.  At best, it was frustrating; at worst, it was alarming.

On the morning that we began Dad's last week in rehab, a nursing aide helped Dad into the shower and then stepped out of the bathroom for a couple of minutes, during which time Dad got up from the shower bench and tried to use his foot to dry water on the floor with a towel, which resulted in his falling.  Luckily, Dad was unhurt, but the fall highlighted the fact that there had really been no improvement in his safety awareness since he had gotten to rehab.

After this incident, I called the rehab director to assert that Dad should not be left alone, even for a minute, and to inquire again about getting recommendations and orders for things that would be necessary after discharge, including home health equipment, a handicapped parking permit, outpatient therapies, and insulin training.   I never got a phone call from the social worker, the woman whom we had been told was our Case Manager; very obviously, the onus was on the patient’s family to figure out what needed to be worked out before the patient went home.  I thought it was absurd that I was having to make a list and chase down the support we needed on this; I shutter to think what would have happened otherwise.  Dr. Rehab informed me when I called that Family Education Day would be two days before Dad was discharged.  I told him that was going to be tough to work out for most of Dad’s family; we were all traveling from other cities and were piecing together what needed to be done in between working and taking care of what needed taking care of on our own home fronts.  There wasn’t another option available for this, though, and so I took the day off work and went to the training.  During the training, I inquired about getting an order for a wheelchair since Dad was unable to cover long-distances without totally wearing himself out.  I asked AGAIN about insulin training and seizure training, and I brought up my continued concerns about the need for emotional support.  To all of it, we were told that the recommendations would be given to us in the discharge paperwork, which we’d be given when Dad was on his way out the door.  (**Side note:  I called the oncologist and explained about the wheelchair, and one was delivered, which was nice, but it was an extra-wide!  My 5’10” 155 pound Dad did NOT need an extra-wide anything; in fact, pre-tumor Dad would have been highly insulted at the width of the wheelchair that was rented to him.  I was half-relieved and half-saddened by the fact that he didn’t notice the size of the wheelchair and that he didn’t mind that I’d insisted on getting him a wheelchair.)

Besides the tediousness of the therapies, the lack of privacy, the boredom, and the early-morning wake-ups, something else that Dad really hated at rehab involved eating.  As I posted on the Care Page during this time, “Contrary to what we usually hear about hospital food, Bill says the food at the rehab center is actually pretty good.”  What he didn’t like was having to eat in bed or sitting in a wheelchair with his plate of food on the rolling hospital table for every meal.  He still could not feel much of anything on his left side, which made the motion of plate-to-mouth difficult.  More often than not, he ended up with food spilled on the table, on the floor, on himself, or any combination of the three.  He frequently got very annoyed with himself when he spilled; we tried to clean it up quickly and convince him it wasn’t a big deal, but he was irked and dispirited nonetheless.  

Dad’s buddy the neuropsychologist came by a couple more times that last week; Dad still thought the guy was great, but the guy was getting on my nerves.  At one point, Dad wondered aloud how he had gotten brain cancer, and I heard Dr. N tell Dad that there were some studies indicated that “there could be a link to excessive cell phone usage.”  Great – let’s add Guilt to the other mess of emotions Dad is trying to cope with.  (**Side note:  His saying that would have been bad enough if it were true; it was all the worse because to date no valid studies have conclusively linked cell phone usage with brain cancer.  Jerk.)

Mom asked Dr. N what we should do about finding a neuropsychologist for follow-up after discharge, and Dr. N gave us the name of someone whom he said was a friend of his and was "very good."  Coincidentally, she was affiliated with the practice where our oncologist worked.  That sounded like a good plan, except that when I called to schedule an appointment with her, I was told that she was out on maternity leave through the end of January.  Dr. N himself saw patients on an outpatient basis, but his practice was located even further away from my parents’ house, which would’ve meant about an hour drive each way for them, which didn’t seem reasonable.  He offered no other ideas, and so I added that to my list of things to figure out after discharge.

My mom and I worked our way through a stack of paperwork that we had to FedEx to Duke, and Dad got another MRI scan which was sent to the Brain Tumor Clinic there too.  Dad had another appointment with the Radiation Oncologist; this time he got fitted for a special face-mask which he would wear to hold his head still during radiation treatments that were planned to begin soon after the Duke trip. 

The promise of a nightly Foster’s was a powerful reward for Dad; each evening he savored the beer while he made plans of what needed to happen so that he could sleep better that night (“I need total darkness in here!”  “I’m going to read for 30 minutes and then no talking!”  “I’m going to make myself stay up until 11 p.m. and then I’m going to eat some peanut butter crackers to help me sleep!”)  Every night was a hopeful strategy, none of which worked.  Like Dad, we were all just holding on until Going Home Day.

Coming up next in the Behind The Scene Story ... Part 17 - Going Home

Part 4 – Numbers

Continued from Part 3

On the evening of the day before Dad’s surgery, which also happened to be his 67th birthday, he alternated between being in good spirits and being confused, agitated, and anxious.  In what became a pattern for him over the next ten weeks, he was puzzled by the concept of time; over and over again, he asked if the numbers on the big clock on the wall in his room were right, and each time he was astonished when we said that they were.  It seemed like time was moving so slowly to him; he could hardly believe what time it was whenever we told him, and he sometimes thought it was “p.m.” when it was “a.m.” and vice versa.  To us, though, the time of the surgery was barreling down the tracks; we couldn’t slow things down and we certainly couldn’t stop what was happening. 


My mom, my sisters, and I wrote lots of lists in our Notebook about people to contact, things to remember, and questions to ask the doctors.  We were very worried about Dad’s anxiety and what might be said to him just before or after surgery when we couldn’t be around to screen the information or to protect him.  We wanted so badly to control some aspect of what was happening; it was like putting a penny on the train tracks in front of a runaway train, though.


We wrote in the notebook in capital letters “MAKE SURE THE SURGICAL STAFF KNOWS HE IS LEFT-HANDED AND THAT HE IS AN ATHLETE” because we were concerned about what they might not know or not remember during the surgery.  Dad’s sensation and his movement and strength on his left side was very poor at that time, and I had visions of someone waking him up in recovery and asking him to do things right-handed (thinking that was his dominant hand) and then marking down in the chart that he was A-OK.  Or, even worse, of the neurosurgeon saying to himself, “So what if I cut a little too much on that right side of the brain; it controls the left side, so this guy will still be able to write and feed himself just fine with his right hand.”   We wanted the surgical staff to be aware that
Dad’s "numbers" weren't in the typical range but that that was normal for him - his pulse at rest was around 40 beats per minute and his respiration rate  (the number of times per minute that he took a breath) was around 7, both of which were much lower than for the average person.  During the first couple of nights in the ICU, the alarms on the monitors sounded frequently to alert the nurse to the fact that his pulse and respiration rate numbers were low, as compared to the average person.  We wanted to be certain that they understood that this was normal for Dad; it didn’t indicate a need for more medication or more intervention.  We wanted to underscore the fact that he was exceptional, he was in excellent physical condition, and he was up for the fight - and so were we.


At least one of us continued to stay right by his side every minute to watch over him; he usually knew to ask for whatever he needed, but he couldn’t remember whom to ask.  Several times, he asked the custodian for medication.  We showed him the call light and explained how to use it, but, if we stepped out into the hallway for even a minute, he persistently either yelled out about what he wanted or just tried to get up out of bed to get it for himself, which was not good since his left side wasn't working properly and since he was hooked up to lots of wires and tubes.


Dad’s blood sugar level numbers had been going wild since he had been started on the mega-doses of steroids.  Oddly and very frustratingly, different doctors and different nurses had different ideas about what number on the blood sugar scale indicated a need for insulin.  We recorded every blood sugar level check and the corresponding treatment (or lack thereof) in our Notebook; it became something that we stressed out about because it was a concrete number that measured something that we wanted to be kept in the normal range and because of the inconsistency in how the medical staff addressed it, which held true for the entire duration of Dad’s illness. 


Several members of the surgical team came by that evening for pre-surgical checks, including the physician’s assistant who worked for the neurosurgeon.  I asked her to step into the hall with me and then started to ask her some of the questions on my list, things we thought we very important.  She answered a few, deflected a few, and then said she had to be somewhere else then but could talk to me later on the phone and gave me her cell phone number.  That seemed like an ok plan, except that a few hours later when I dialed the number that she had written down for me a recording told me that the phone number had been disconnected.  Grrrrrr.

 As part of the pre-op procedures, Dad had stereotactic markers glued to his head; they looked like little white footballs affixed to his skin.  They were going to be used during the surgery so that a portable MRI could show the exact location of the tumor when the surgeon was preparing to cut.  One minute, Dad jokingly asked the nurse, "Can I if get a discount on this brain surgery since they won't have to shave my head since I'm already bald?" but the next minute, he had forgotten what the markers were and kept trying to pick them off. 




After a double dose of pain medicine that night, Dad finally got into such a deep sleep that we felt that we needed to stare at his chest to be sure he kept breathing.  Several times he jerked sharply in his sleep, and a few times he had the hiccups, both of which we were told by the nurse and later by the doctor were related to the tumor and/or to the steroids.  Dad mumbled things like “I don’t feel good” and “I don’t know why I have to be here” in his sleep that night, which broke our hearts.  We wanted so badly for him to be pain-free and to not be scared. 


I made a big mistake that night.  My middle sister and I had taken a middle-of-the-night shift, and, once Dad was asleep, she offered to watch over him while I went next door to the waiting room to get some rest.  Once in the other room, I couldn't stop the thoughts that were racing through my head, so many what-if's, why's, and how's. I took out my cell phone and entered "GBM" into the internet search box to see what the web had to say about glioblastoma multiform, the type of cancer the neurosurgeon had told us that afternoon that he thought Dad had.  Words like "aggressive," "deadly," "incurable," and "poor prognosis," and then the worst of the worst, the Numbers … "average life expectancy of ten months."  I started coming apart at the seams.  It was late, but I was desperate, and so, sobbing so hard I could hardly talk, I called my husband.  He talked me down off the ledge, and I was eventually able to get myself together enough to go back into Dad's room.  Luckily, it was dark in there, and so nobody noticed the redness of my face from crying.  I kept repeating to myself inside my head, "That's not us.  That's not us,"  in an effort to convince myself that either (a) the mass wasn't a GBM, or (b) if it was, that prognosis didn't apply to Dad.  One thing I had learned for sure, though, was that not knowing is not always the worst thing.

 Very early the next morning, Dad started mumbling a string of numbers in his sleep that we could only identify as being a phone number.  He recited the numbers over and over, always the same numbers in the same order, and, finally, I did a Google search of the series on my cell phone.  It turned out that it was the phone number to The Royal Sonesta, a hotel in New Orleans where my parents headed up a business meeting every February, and for some reason Dad must have been thinking about that hotel in his sleep.  He was very worried about missing work and wanted to get started on organizing that meeting; we, on the other hand, had more of an indication of what was coming, and all of our worries were directed toward the mass in Dad’s head, which we desperately hoped would be ousted completely in the next few hours during the surgery.

Next in our story … Part 5 - Surgery