Part 6 - Standing By

Continued from Part 5


When Dad was moved back to his room in the Neuro-ICU, he looked fairly good considering what he had been through that day.  He had a headband-type bandage on his head, and there was a drain - a thin, clear tube with a bulb at the end - coming out from underneath the bandage.  He was awake and talkative.  Predictably, he had a headache.  He was hungry and ready for a chocolate milkshake, he said.  It was hard to believe the trauma that he had just been put through in the operating room.


As before the surgery, the medical staff continued to ask Dad questions to check his orientation and memory.  He hated it when he got the answers wrong; it seemed to me like he was more aware of his unawareness (he realized when he didn't know the right answers) more than before the surgery, which I thought was a sign of improvement (I soon became an expert in Microscopic Improvement Recognition - more on that later!) but it was hard to see him so frustrated and discouraged.  He wanted to be quizzed so that he would get the answers right every time; he even suggested at one point that we write the info on his hand so he could have a Cheat Sheet.


We continued to take shifts to be with him around the clock.  As was par for the course, he slept very little overnight.  His bed had to be kept with the head up, and he had to stay on his back in the bed because of the risk for increased intracranial pressure, which made it even harder for him to get comfortable enough to sleep.  It seemed to us that the nurses were being stingy with the post-surgical pain meds; several times Dad said he head really hurt and the nurse said he had to wait for medication.   It didn’t seem fair – but neither did any of what was going on!  He kept wanting to squeeze or pull at the drain coming from his surgical site and the 36 staples in his scalp and said the arterial line that had been put into his wrist was incredibly itchy.  He required constant monitoring to be sure that he didn't touch either of these two things. 


He was especially chatty in the wee hours of the morning, and he kept asking for his cell phone and his laptop so he could “catch up on work.”  Every time the subject of his taking some time off work came up, he got very worried and sometimes even argumentative or panicky; eventually we just started changing the subject or saying “We’ll see how it goes” whenever he asked if we thought he would be able to get back to work soon. 


Besides taking care of Dad, we had two main objectives at that time:  finding an oncologist and figuring out when and how to tell him that he had Brain Cancer.  Both were equally stressful; I felt the first one was proactive and needed to be completed as soon as possible, like a 9-1-1 house-on-fire type of situation.  The second one, though, I wanted to delay as long as possible; I really didn’t ever want him to have to know what we knew. 


Dad asked a few times about how the surgery had gone.  It was the first time (but not the last) that I lied to him while he was sick either directly or by omission, but I felt in my gut that he needed to get a little stronger after the surgery before that ton of bricks was dropped on him.  Even though he had always been the strongest, toughest person I knew, I kept having flashes in my head of him crumbling when he was told, and, truth be told, I didn’t feel strong enough myself to withstand it if that actually happened.


We fervently wrote pages of directives and thoughts in the Notebook about what to say to Dad about the outcome of the biopsy.  I persuaded the nurse to put a highlighted note in the chart to alert all staff members that Dad was not to be told about the diagnosis until it was cleared through Mom.  My biggest fear during that time, albeit one that was totally deflected from what we were very obviously most afraid of, was that Dad would find out about the cancer in a way that would cause him to think it wasn’t worth fighting.  We were frantic in our efforts to slow down the runaway train and to protect him as much as and for as long as we could.

My mom, my sisters, and I were like prairie dogs from this point on; we alternated specific jobs along with intermittently eating and sleeping so we could keep ourselves going.  One or two of us were always on watch, guarding and caring for Dad; at least one of us was frantically researching physicians and treatment options at any given time; and one was usually off-duty, albeit ALWAYS on High Guard and with cell phone on LOUD RING, just in case.  My parents’ house was about a 40-minute drive from where we were, and so we rented a hotel room one street over from the hospital.  Our shifts were usually on a four-hour rotation, and so cutting out that commute allowed us to get every minute of sleep possible on our off-duty time.  Staying in the hotel room also kept us from getting distracted by things to do at their house, like laundry, returning phone calls, etc.  A couple of their friends went to their house multiple times per day to let the dogs out so we crossed that off our list of things to deal with.  We ate on the run in between shifts or in the corner of Dad’s room; I have never eaten as poorly as I did during the ten weeks Dad was sick, but it wasn’t something we could care about at all during that time.  We were too busy standing by with our Prairie Dog roles and with trying not to drown in the doom.

Coming soon … Part 7 – A New Bucket List

Part 5 – Surgery

Continued from Part 4

The surgical team came to get Dad very early on the morning of the day of the surgery.  The technical name for his surgery was a biopsy and debulking; the neurosurgeon wanted to get a sample of the tumor for diagnosis and remove as much of it as possible, which he said would relieve many of Dad's symptoms for the time being.  We had tried to get as much information as we could about what to expect so that we could be as prepared as possible for just before, during, and after the surgery, but many of our questions had gone unanswered and at that point we were all just fighting off sheer panic.  It was like that saying about the appearance of a duck:  we were calm and in control in front of Dad but paddling like hell beneath the surface just to keep afloat.  My mom, my sisters, and I made a pact that we would not cry in front of Dad before the surgery; our strategy was to exude calm confidence around him so that he would take that with him into the surgery. 

Right after they entered Dad’s room in the ICU, the surgical prep team very quickly disconnected the wiring that was hooked up to the monitors, hung the IV bags on the railing and unlocked the wheels on the bed, and rolled Dad’s bed out into the hallway.  “Tell your family goodbye,” the surgical nurse told him.  Fortunately, he was facing away from us at that point because with those words we were all fighting back tears with all of our might.  Whether it was intentional or not, though, Dad was casual; he gave us a wave and then started chatting up the nurse about how he thought it would be a great idea if hospital patients were allowed to have dogs sleep in their beds with them.  "I could have my dog Buddy right here with me," he told her, as he patted the empty spot in the bed by his legs.  

I remember watching his bed be rolled to the end of the hall and then turned so that he was out of our sight.  My eyes filled with tears that I couldn’t stop from spilling over.  I wanted to run after him and say, “STOP!  This is all a mistake!” or at least to give the surgical team a pep talk before they cut my dad’s head open.  I wanted to control what was happening, but there was no control to be had.  I turned to go back into his ICU room and was dumbstruck by the emptiness; I hadn’t realized that they would take him and his bed out of the room that now had almost nothing left in it.  It seemed so harsh, so foreboding, so threatening, and so sad.

My mom, my sisters, and I gathered our things and headed to the ICU Waiting Room, where we had been assured a phone call would come to let us know when the surgery had started and to update us every hour while it went on.  We were on High Guard; our stomachs were in knots as we paced and fretted over the next several hours.  It slayed me that we didn’t even know where in the hospital Dad was during that time; we had been directed to wait in that particular waiting room and so we didn’t even know on what floor the OR was located.  

It was the only period during the time Dad was sick that we had nothing to enter into the Notebook.  Time seemed to move at the pace of a snail, with one desperate hour dragging into the next.  One of my brother-in-laws set up the Care Page so that we could more easily update friends and family members on what was happening, and we tried to create an entry in the waiting room while we waited on an update on Dad, but the Internet connection and the cell phone signal in that part of the hospital were awful.  Actually, it was pretty symbolic for the way the communication between the surgical team and us was going – it was spotty and sporadic at best.

Waiting in that ugly, cold room that day, there was a tenseness that did not go away.  It was just too difficult to imagine what we could lose and so we only dealt with it in bursts.  We took turns holding it together and falling apart; I am sure that in my pacing I covered at least five miles within the walls of the hospital that day.  The sense of desperation and dread were palpable.

The phone in the waiting room did ring many times that day, although not all of the calls that came were for us.  We would literally jump out of our seats each time it rang; I am certain I broke my personal speed record each time I raced to answer the phone.  The updates were all sparse but good; things seemed to be going according to schedule even though for those of us waiting time seemed to be almost standing still during those hours.  Finally, at 1:15, the voice on the other end of the line told us the surgery was over; Dad was in recovery and the neurosurgeon would be up soon to talk to us.  We breathed a collective, tentative sigh of relief. 

However, for some reason the neurosurgeon didn’t appear until 4:15.  An hour before that, I had gone back into the ICU to ask Dad’s nurse in there to call and see what was wrong.  She reported that Dad was off the ventilator but still sedated and that she didn’t know why the surgeon hadn’t been up to see us yet.

When he did show up to usher us into the Room of Doom (You know you’re not going to get GOOD news when they take you in THERE!), he told us that Dad did indeed have the most aggressive and most difficult to treat type of brain cancer and that the prognosis was not good at all.  He told us that he had “managed to remove 80% of the tumor" and said the remaining part was “buried too deep in the brain.”  He offered us the name of a colleague of his, an oncologist whom he said was active in many clinical trials.  I wrote down everything in the Notebook and, when I had run out of things to write, I fell apart.

Continued here… Part 6 – Standing By

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

Part 3 - Whew, I Need a Vacation!

Even though the nights in the ICU were long and hard and scary, we did our best to make the time during the day not that way for Dad in the days leading up to his surgery.  We talked him into drinking milkshakes and eating hamburgers ("I'm going to have to have to run 20 miles to burn this off!" he declared before he consumed each thing we brought him.) We tried to keep our terror at bay in front of him.  We took turns spending time with him; between my mom, my aunts, my sisters, and me, one of more of us was with him around the clock.  We wanted to comfort and protect and care for him; it was start of our Whatever It Takes Plan, and we were solidly committed to being right there for his sake and for ours.


There were lots of medication adjustments during this time; it seemed like the plan was being cobbled together, and I desperately wanted the doctors to get their act together and figure it out!  Dad was being given a massive dose of steroids to address the swelling in his brain around the tumor site.  With the steroids, he couldn’t sleep.  The nurses kept asking him what his pain level was on the pain scale, and he almost always said it was around a 5 or 6 out of 10.  Sometimes the nurse that asked thought that number warranted pain medicine for him; sometimes he or she didn’t.  When he got the pain meds, he dozed for a short period of time, but, like during that first night, he was very restless, anxious, and talkative even in his sleep.


The oddity of the comments Dad made in his sleep was increasing; at one point he thought there were monkeys sitting on a couch in his room. (There were no monkeys and no couch.)  Some remarks were casual; he actually said “I’m bored” in his sleep at least ten times each night.  Some of the utterances he threw out didn’t make sense in the context in which he said them (“I’m going to the oyster bar and I’m going to eat a dozen!”), but we were usually able to piece things together and make an educated guess as to what he was talking about (often, for some reason, New Orleans).  Even in his sleep, he chattered about a few things he hoped to be able to do when he got out of the hospital; several times, he exclaimed, “Whew!  I need a vacation!”


He was obviously aware of the gravity of the situation on some level, because some of his sleep-talk involved worrying out loud about his health, about Mom, and about work and finances.  He wished aloud that his dog Buddy could sleep in the bed with him and wondered when he would be able to exercise again (“Hopefully this weekend,” he said, in answer to his own question.)  In between the short bursts of sleep, Dad was mostly oriented and very chatty; he talked about the fact that it was his birthday and how much he wanted to get out of the hospital to do something to celebrate.  He asked about when he could see his grandchildren and his mom, who was on hospice in a nursing home nearby.  It was all very overwhelming and very sad, and it made us want to close ranks, to hover over him to try to protect him, as we anxiously waited the surgery that we hoped and prayed would clear out that damn tumor that was causing all of this.


On the day before the surgery, the neurosurgeon paid Dad a brief visit during which he informed us that the full-body CT scan had shown no evidence of cancer in any other part of Dad's body.  We rejoiced, although that turned out to be both premature and naive; we later found out that it actually would have been better news if the cancer in his brain was the result of another type of cancer that had spread from elsewhere in his body.  (Other cancers are typically less aggressive and offer more treatment options than the type that Dad had.)  At the time, though, we were happy for what we thought was Good News; it helped us to steel ourselves for whatever else was coming down the pipe.


Dr. Personality (NOT) also ominously informed us that the MRI had shown a mass that was 3-4 cm in size on the right side of Dad's brain and that the tumor was irregular in shape which would make it more of a "surgical challenge."  Luckily, Dad was only half-listening at the time, and, to keep from alarming him, we asked the doctor to go out into the hall with us to discuss the rest of the findings.  There, in the glass hallway of the ICU, the neurosurgeon told us he thought the mass was brain cancer and that Dad would likely be in the hospital for three days after the surgery and then would start a pill-form of chemo plus radiation about ten days later.  We knew that Dad could see us through the glass wall, and so we held our faces still so as not to alarm him.  Before I could get the notebook with our list of questions, the doctor flew off down the hallway, leaving us with even more to worry about.

The neurologist came by later that day, and he answered as many of our questions as he could.  Some things, he said, we just had to wait and see about; I hated that - I wanted a Plan!  When we reported the lack of sleep and the restlessness Dad was experiencing at night, the doctor wrote an order for a different nighttime medication in hopes that Dad’s quality of sleep would improve.  He said Dad had to continue on the high dose of steroid and also on the anti-seizure medications indefinitely. 


Dad had had an EEG the day before to check for residual seizure activity, and we asked the neurologist about the results.  He checked the file and said the results weren’t back, which began the game of Pass The Buck/I Don’t Know – Ask Someone Else that we played with the medical staff over the next three months.


In between doctor visits, the nurse brought in a consent form for my mom to sign for the surgery.  I thought it was peculiar that it was the nurse who was assigned to go over the risks and then to get the permission, especially considering how very risky it would be, rather than the two physicians who had been by earlier; I wondered if the doctors just couldn't be bothered by such a task or if they thought the nurse had a better way (and chance) of doing what needed to be done in this case.  The risks were all there on the consent form in black and white; we hadn't been given any other options at all, though, so Mom signed what she had to sign and we steeled ourselves so that we could go back into Dad's room with smiles on our faces, as his Guards and his Warriors, ready to face whatever needed to be faced.

Coming soon … Part 4 - Numbers