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 everwant 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.
My wife has a Glioblastoma and I'm identifying with all the trauma,known's and unknowns of this disease. Like your father my wife was a fit person ate right and did all the right things for good health. She has been fighting this disease since May of 2016. Her tumor was accessible and in the right parietal lobe. She has had 2 craniotomies and 3 back surgeries. She had broken a number of bones in her back which was caused by the steriod she was on. The steroid can cause osteoporosis, which is a side effect. She was bedridden for 2 months in the fall of 2016 recovering from the back surgeries. She is walking now but has lost so much. She has times of confusion, memory loss and weakness on the left side of her body. Personality changes are very noticeable also. She was in an immunotherapy trial which wasn't working. Now she is on Evastin which seems to be working. I have twin 24 year olds who are also dealing with this. I would like to thank you for the diary of everything that you endured during your fathers illness. It must not have been easy writing this. I can identify with the issues that your father went through. Thanks again for telling you story.
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