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.

May I Have This Dance...

Saturday, August 27 was Megan's first full day home. A smile-inducing breakfast of assorted fruits and an electrolyte-heavy juice drink started the day off well. These would be the staples of Megan's diet for the next several days. Although frequently tired and not very talkative, Megan was responsive, eating and in good spirits.

The weekend hospice nurse came to see Megan to admit her and establish her medical file with the hospice care team. She explained that we could expect to see her regular nurse 1-3 times per week, depending on how symptoms progress. Additionally, a nurse would be available 24 hours a day to answer our questions by phone should anything arise. If necessary, as determined on the phone, a visiting nurse would be just a moment's notice away to come to the home.

She went on to clarify that ultimately, we, Megan's caregivers, would be the ones to handle the majority of Megan's needs, and the hospice team was there to assist in making that possible.

She also described the other members of the care team that were available to help us support and keep Megan comfortable. In addition to the regularly visiting nurse, we could expect assistance from each of the following:

- Physical Therapist: available to assess Megan's ability to move around the house, and suggest potential movements or exercises Megan could do to make such movement easier.

- Social worker: available for support and counseling needs for both Megan and her family members.

- Chaplain: available for prayer, and religious or spiritual counsel for both Megan and her family. Nancy would ultimately preside over Megan's interment ceremony and was a wonderful source of comfort throughout these final days.

- Home Health Aid: available to assist in giving Megan a sponge bath or shampoo, help with light cooking or cleaning and perform other, similar tasks around the house. We received a visit from an aid later that day, and Megan received a sponge bath. This was especially welcome because Hurricane Irene would be here tomorrow and could disrupt visits early in the week.

The inter-disciplinary hospice team sounded very thorough and the support, help and knowledge was welcome and needed.

After completing paper work, our attention turned to Megan. The nurse asked how Megan's diet had been today. We described a quantity of strawberries, watermelon and honeydew melon that Megan had enjoyed earlier that day. The nurse asked about fluids. On the glass in front of me, I gestured to a point on the full-side of the glass.

"That's great. That's more than most of my patients eat and drink in a week."

I was elated. While I certainly knew Megan's diet was greatly diminished, I had no concept of what a reasonable amount of food and drink would consist of. The nurse just told us Megan was eating and drinking well, and with the help of the soon-to-start-working Lactulose, I was sure there would be more good days ahead of us. I was sure.

While the Lactulose had yet to start working, the Lasix, intended to exercise Megan's kidneys and potentially draw some of the excess fluid in her abdomen out of her, was working overtime.

With assistance, Megan was able to get out of the hospice bed and walk to the bathroom for the first few days at home. I would stand in front of and facing her, and Megan would wrap her hands around my neck while I steadied her with both of my hands on her hips or waste. Together we would shuffle around the house like a couple of kids at a Junior High dance, just much slower.

These "last dances" we engaged in are among my most cherished memories of these days. Facing each other, I could look into her eyes and we'd smile at each other. When a break was needed, I'd take her full weight in a hugging embrace and let her catch her feet or breath. As we moved in tandem, I'd offer words of encouragement, tell her how much I loved her, and promise I had her, and that we were almost there.

On one such trip, Megan wanted to stop and sit on the couch. I helped her down and then sat down next to her and put my arm around her. Exhausted, she collapsed into my embrace and leaned her head on my shoulder. I didn't know it at the time, but this would be the last time we would hold each other in this familiar and regularly occurring expression of love that often accompanied watching TV or a movie.

While on the couch, Father Tom, a family friend and priest that ultimately presided over Megan's funeral, came to visit. We all prayed together and after performing the sacrament of the Anointing of the Sick, Fr Tom asked for a few minutes alone with Megan that he later shared with us.

Among other things, he told Megan that she was on her way to a beautiful place where she would be safe and loved and out of pain - Heaven. God would care for her, and have a place for her ready and waiting, when the time was right. She nodded and confidently whispered "Yes, I know."

There were many other visitors that day that Megan enjoyed, although each visit made her more tired than the one before. For the latter part of the day, Megan was very quiet and slept for much of it.

When nightfall came, I kissed Megan and went to spend the night in our bed for the first time in over a week. Mom Lally would sleep on the couch next to her tonight, as I had done the night before, and so I wished Megan all my love and told her I would see her in the morning.