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 theaverage 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.
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. Jennifer 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.