Monday, May 16, 2016

Chapter Two, 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 a better 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.

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