Glimmers and Notes of Hope

"Rusty asked me to tell in my words how my night went with Megan; this was the first night that Rusty was able to sleep in his own bed in quite a few days.

As Rusty mentioned, Megan’s Oncologist said that giving her lactulose would possibly help eliminate the “fogginess” that Megan was experiencing. Of course, this meant trips to the bathroom and in my mind, each trip meant that Megan was possibly going to be more alert.

That night I lay down on the couch near Megan and tried to catch some sleep. Sometime during the night, Megan began stirring and this usually meant that she had to go to the bathroom. Hopeful, I asked her if she needed to get out of bed to go to the bathroom. She nodded eagerly in the affirmative.

This was a good sign! I helped her out of bed and guided her off the bed through the kitchen and into the bathroom. (A note of explanation here: the cover to the toilet seat is usually left down to prevent the cats from drinking the water.) When we got the bathroom, Megan plopped herself down onto the cover even before I could get in there to bring it up.

I remarked: “Megan the cover is down; you can’t go to the bathroom with the cover down; let me help you up so that we can pick it up”. Indignant, she answered, “I can do it myself”. She proceeded to place one hand on the nearby sink and the other on the toilet paper holder to lift herself up; before I could help her, her weight on the paper holder made it collapse. She realized that she could not do it and said “I guess you’re right”.

I helped her get up and it was then I realized that she had no intention of going to the bathroom. She was headed for the kitchen to sit at the table and this was a ruse to get her there. I guided her to sit on the chair. I was heartened because this was a positive sign to me that she was becoming more alert. She began mumbling something about “bacon” and after a few frustrated attempts, she said something like “I need to cook the bacon”.

I asked her why she needed to cook bacon at 1:00 in the morning and she said that she needed to make Rusty bacon for breakfast. She proceeded to try to get up out of the chair and said “I need to get the pan out to make the bacon”. I suggested that Rusty was asleep and that she should wait until the morning to make the bacon so that it would be fresh for him when he woke up. That did not placate her.

She commented that her hair needed to be pulled back so that it would not be in the way while she cooked. I said to her sternly, “I’ll get you a hair tie, but don’t you dare get out of that chair; you’ll hurt yourself”. She remained in the chair for the few seconds that it took me to get a hair tie.

We put her hair back and she said “I need to get the bacon out of the refrigerator”. I again told her that it would be a better idea to wait to cook it in the morning. I lost her then. I could tell by her expression that she agreed with me and we both proceeded out of the kitchen with me guiding her into bed. She went back to sleep after that."


Another sign that the hepatic encephalopathy was worsening was this change in sleep patterns. Night could become day and vice-versa. Two nights in a row now, Megan was more cognizant in the evening or wee-hours of the morning than at other times throughout the day. Although clearly exhibiting signs of confusion, I was still encouraged by Mom Lally's recounting of the prior nights events when I heard Sunday morning.

As long as she was still active, able to get out of bed and cognizant in some capacity, I was optimistic that the Lactulose would kick in and take care of the rest. I was also encouraged because I felt Megan's desire to use a bathroom trip as an excuse to be helped up and brought into the kitchen, get to the freezer and ultimately make bacon showed she was still mentally sharp and calculating on some level, even if we didn't understand exactly what she was thinking.

Between incidents such as this, Megan slept a lot - another terrible sign of a failing liver. When awake, her demeanor varied from alert and seemingly paying attention, albeit with varying degrees of response, to a more-or-less catatonic state.

Megan was never as alert and functional under hospice care as she was in the hospital. I don't think we had a full, two-way conversation from the moment she was home, but for much of her time at home she was quite responsive. Her replies varied from head nods, to mouthed or whispered words, to fully verbal replies, but she would slip from demeanor to demeanor effortlessly, and no sooner than you had a talkative Megan, she might be gone.

When in the midst of consuming another does of Lactulose, Lasix, pain-killers and antibiotics, I offered words of encouragement. "Great job, Megan. Open-up, baby, just one more pill and then I'll leave you alone for a few hours."

"I've heard that before," says Megan, dryly, slyly and with complete deadpan expression and timing.

Before I could complete the naturally-elicited laugh that followed Megan's still-sharp whit, and say "She's still got it," she was gone again and unresponsive.

When like this, her eyes might disturbingly flutter back into her head and then effortlessly return, another sign of liver failure. When she would again become alert, she might float between a cognizant, aware Megan, and one, that as the hospice chaplain said, "had one foot planted in this world, and the other in the next."

Megan was at her most expressive when speaking from this next world.

Early on, I was rewarded with another glimmer of hope that made us realize everything Megan said was important, even if we didn't understand exactly what was said or meant. After a particularly quiet afternoon as I was sitting at Megan's side, she stirred, turned her head to me, focused her eyes and whispered slowly with a long, drawn-out rasp.

"Baaaayyylaaaaaaa......"

I wasn't sure what I heard. I asked Megan to repeat herself. I think she did, and this time I heard the syllables a little bit differently, or maybe I just replayed her whisper in my mind and heard things with a little different clarity, but regardless, I had an idea of what she was asking for.

She wanted to hear a song.

Megan was requesting a Phish song, but not just any song, a particular, specific version of Slave to the Traffic Light that featured banjo-virtuoso Bela Fleck. I had posted this particular version on my website just weeks before and Megan commented shortly after how much she liked it.

Now she wanted to hear it again, and of course I honored her request. After the delicate guitar intro began, I was rewarded with an incredibly wide smile, head-bobs and verbal acknowledgement that she recognized the song and yes! This was exactly what she wanted to hear.

By the time the 11 minute opus ended, Megan was quiet again, but I need only look to the comments she put on my site at the beginning of August to know exactly what she was thinking as she laid there, smiling, peacefully taking in the music.

I *really* like the banjo picking at the end. Perfectly timed, and it made that part of the song sound a thousand times more beautiful than it already is.

In the comfort of our home, surrounded by posters and other memorabilia from the literally hundreds of concerts we had attended together, we were still finding ways to connect and share and love, even in these, thus-far, darkest-of-our-days.

There would be music playing in our home for much of the remainder of Megan's time on Earth, from this point onward.