Listen as she speaks to you

Everything Megan said had meaning. Sometimes we received fragments of her thoughts that allowed us to determine what she needed, such as a request of a beautiful song. Sometimes Megan spoke in complete, coherent, perfect requests.

On Sunday, after a break from Hurricane Irene, Megan wanted to go outside. It was still quite overcast and a little chilly, but the ninth of 2011’s named storms, and the first to reach hurricane status, was largely behind us, so out we went.

With help, Megan was still able to walk, and so we commenced on another of our favorite last dances, and together we went. Mom Lally and Jocelyn quickly navigated a chair to a nice spot on the porch and I helped Megan sit down. Wrapped in Jennifer’s beautiful hand-knit shawl, Megan sat on our favorite porch, that we had built with our own blood, sweat and tears just two summers before. We all enjoyed a few minutes of the post-storm calm. Although there was no sun to be seen, and there remained a periodic wind that would blow an occasional drop of rain onto Megan’s face, this was still a beautiful day.

Sometimes, Megan said things that we just didn’t understand. When she was speaking with one foot in the next world, to reuse Nancy’s phrase. We quickly decided that we would write these statements down in the hopes that as we shared notes or compared one statement to another from several hours before, some meaning might emerge, and we could be sure we were keeping Megan comfortable and as happy as possible.

Megan often spoke of a little girl. Sometimes this little girl beckoned her to come towards her. Sometimes the girl needed help. At least once, I learned that she had red hair. I wrote many other phrases down, but this was a recurring theme.

Daisy, our hospice nurse, later told us that many people in hospice care see children or relatives that had previously passed away. Megan had also talked about “going home”, and “making it to the next stage”, and Daisy let us know that this was also to be expected. Megan, she explained, was very much aware of what was happening to her and the road ahead.

It was now Monday, and Daisy thought that road could go on for a while. The Lasix and the Lactulose were only just starting and Megan was still physically strong. Our main focus needed to be keeping Megan comfortable, but she agreed that those drugs were worth continuing and there was still hope for the positive effects of those drugs that we so desired. She said she thought we were doing a good job, and that she would see us again on Wednesday. As she departed, Daisy reiterated that keeping Megan comfortable was the primary goal.

When Marlene, Megan’s massage therapist called up later that day and expressed her desire to visit, we agreed that nothing would make Megan more comfortable.

Armed with beautifully scented oils, her strong, yet delicate hands, and her huge heart, Marlene came to visit and was greeted by Megan with the hugest smile I had seen in quite some time. When Marlene asked Megan if she’d like a foot massage the smile grew and was accompanied by a resounding Yes.


For a few minutes, as Marlene gently massaged and lovingly soothed her feet, Megan was whisked off to her favorite spa for a lazy afternoon of pedicures, manicures and gossip with the girls (Mémère, Mom Lally and Jocelyn, no-doubt). When the massage was over, Marlene gave Megan a big hug and the spa trip was over, but I knew we were doing our best to be sure Megan was as comfortable as was possible.

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.

Megan's return home

It was now Friday, August 26. Megan and family had decided the prior day that it was time to go home. Megan was still largely sensible and coherent, but was already exhibiting signs of delirium - a terrible sign that her liver was continuing to fail. Just a day before she had written several sentences for inclusion in a post on her blog, but the writing already showed that her mind was slipping.

Megan wanted to blog, so I happily navigated my iPad to her site and handed it over to her. When she handed it back just a minute or two later, it wasn't the length of the blog that concerned me. Although it was certainly coherent, it was like a completely different person had written it from the talent that wrote the eloquent and witty and heart-melting and beautiful posts like To Sir, With Love or Dear Miss Manners. I clearly remember the sinking feeling in my stomach and soul as I read her words. My beautiful Bride was worsening and deteriorating before my eyes and I was loosing her.

When we spoke to one of the physician's assistants that Friday morning, I asked about Megan's mental state. I had read that there may be something she could take to slow that progression. Physiologically, the malfunctioning liver was responsible for dumping ammonia into Megan's blood stream that otherwise should have been cleared into waste products. The build-up of ammonia leaks into the brain and is responsible for this degradation in cognitive state, also referred to as hepatic encephalopathy.

The PA explained they had been watching for this condition with a physical test. The PAs or Drs had several times asked Megan to hold up and extend her arms, hands outstretched, finger-tips to the sky in a sort of "I'm stopping traffic" pose. I don't think they ever saw the physical indication, but I'm not entirely sure what that indicator is, either. I think they were looking for some sort of in-ability to steadily create and maintain that pose. After one such test, the GI doctor remarked that Megan had passed.

The physician's assistant decided to prescribe Lactulose. Lactulose is prescribed in cases of constipation, to prompt bowel movement, and is also used in cases of liver failure to draw ammonia from the blood into the colon where it can then be removed from the body. Unfortunately, it would take 24-48 hours for the drug to move through Megan's system, but I was relieved to know there was a treatment.

Later that morning, I asked Megan if we could talk seriously for a moment.

Our conversation was difficult. We spoke of end-of-life issues that no thirty-something couple should have to speak about. After an exhausting several minutes we decided that we would take a break and continue the discussion tomorrow. Megan was departing shortly, anyway - of course there would be time to continue these discussions at home. We cleaned up the tears that had flowed so easily and continued preparations for her departure.

In hindsight, the drive was magnificent. At the outset, Megan was assisting in the directing of Mom Lally's driving to get us onto the MASS Pike and her mind was highly alert and functional.

"Take a right at the light"

The directions Megan assisted with over the initial several miles were completely normal and perfect. By the time we drove the approximately 43 miles to Worcester, Megan was exhausted and asleep. The doctors had predicted that the drive would wipe her out, so this was to be expected.

With help, Megan was able to walk up the stairs into our home, change and get into the previously configured hospice bed. We took this moment of alertness to give her her dose of Lactulose and her other prescriptions and then she slept almost immediately. After about 2 hours Megan awoke and was surprised to find out that it was not Saturday. She thought she had slept for considerably longer through the night.

After a light dinner, Megan slept again. I needed to wake her between midnight and 1:00 am to take an antibiotic in case there was still infection at hand. When Megan woke naturally I used this as an opportunity to give her the same antibiotic she had been receiving for several days, but this time she resisted.

"NO! It's not right! Too many pills! I won't take anymore!"

Megan was confused, agitated and NOT happy to be given more pills. She felt she was being tricked, ganged-up upon and these were NOT her pills. After some coaxing, pleading, and the encouragement and addition of an anti-anxiety drug, Megan took the antibiotic and went to sleep peacefully, but this new symptom was clear. The delirium was escalating quickly, and the Lactulose we prayed would give us more great memories with a clear-headed-Megan needed more time to begin working.

First, a symptom review

Megan's symptoms upon entry into the hospital are well-documented in my post from August 23, but from the days following that, to my next post, the symptoms escalated considerably, and those details are lacking. I'll begin by summarizing some of those new symptoms and clarifying some of the statements in prior posts.

First, let me say that up until Wednesday, August 24, I had every reason to expect, hope, pray and believe that Megan was going to be OK (well, as OK as someone with metastatic breast cancer could be - of course I didn't expect her to emerge cured, but I did have an expectation that her time was not as numbered as it was, and she would return to some version or subset of normalcy).

I realize now this was naive. There were symptoms that could explain what was happening. In hindsight, I do wonder if her care team could have more properly educated us of the significance of some of these symptoms, or if they did, and we, those who love Megan and were there listening, simply focused too much on the glimmers of hope. Regardless, it's not my intention to cast aspersions on her care team with these posts (I have NO doubt Megan was under the best care) but rather, this is my attempt to reconcile those symptoms and signs with the timeline of Megan's final days.

In hindsight, the swollen gallbladder was probably not an infection, but I don't think this can be completely determined. Likely, the tumors in the liver were rubbing against the gallbladder and causing inflammation due to the close proximity of the two organs. This explains some of the new pains Megan was feeling, including those in her lower back on the day she was admitted to the hospital, and the feelings Megan wrote of in a prior post that she felt in her shoulder that were later described as transference. Between the swollen gallbladder and the increase in white blood cell count, infection was seemingly a worthwhile avenue to explore, but ultimately not the culprit. A decrease in gallbladder size over Megan's stay gave hope to the infection-theory, but was likely just a red-herring. The WBC count steadily rose and pointed to something other than infection.

It was also during Megan's time in the hospital that ascites set in. Ascites is the condition that occurs when the liver is no longer able to synthesize a certain protein that is used to regulate fluid levels in the body by keeping this fluid in the blood vessels. When this protein is no longer available, fluid builds up in the abdomen that leads to increased abdominal size. The nausea and vomiting Megan felt on the day she was admitted, and periodically during her hospital stay, could also potentially be attributable to ascites.

Her care team explained this increased abdominal girth by pointing to her dehydrated state when she was admitted, and indicated that they had done too good a job of re-hydrating her via IV fluid. They thought the excess fluid they pumped her up with was contributing to this condition, but in hindsight, this was a classic symptom of liver failure. A drug, lasix, was prescribed upon exit from the hospital to exercise Megan's kidneys via bathroom trips to potentially remove some of this retained fluid.

Finally, as the bilirubin levels in Megan's blood increased, a condition called jaundice set in. Bilirubin is created by the normal breakdown of old red blood cells that naturally occurs in the body. A functioning liver removes this pigment. When the liver malfunctions an excess amount of bilirubin collects in the blood and eventually seeps into and gives the skin and whites of the eyes a yellow-ish tinge.

A look at Megan's Total Bilirubin measurements gives some startling insight into just how quickly her situation escalated. For reference, a "normal" amount of this total bili count is 0.2 - 1.2 mg/dL (whatever that means). Below are Megan's measurements during her stay in the hospital and for several of the blood draws done prior to her hospitalization. I don't have the exact reports for all of these dates, so where I've relied on my notes or memory I've indicated with "~".

06/30/2011 - 0.9
08/03/2011 - 0.9
08/15/2011 - 1.3
08/19/2011 - ~2.0
08/20/2011 - ~2.5
08/22/2011 - 4.6
08/23/2011 - 4.8
08/24/2011 - ~9.0
08/25/2011 - ~10.6
08/26/2011 - 14.3

She went from consistently normal (albeit the high-end of normal, but normal nonetheless) to terminally critical in less than a month. The morning that her hospital stay ended she was ~14 times higher than the high-end of normal.

As I wrote earlier, many tests were run to attempt to explain this excess bili. An MRI was run and showed that the bile duct was clear and didn't also indicate any significant growth from prior tests. This, of course, gave us further hope that infection was to blame, but in reality, significant tumor growth was just not necessary.

The liver can function with only as little as 10% of healthy tissue. Megan wrote of the dimensions of her tumors in prior posts and essentially I think she found herself on the cusp of that line. Simply put, it didn't take a lot of tumor growth to bring us to this point. While we clung to every hope that this was something other than cancer for all the aforementioned glimmers, the reality was that Megan's liver was failing due to metastatic breast cancer and "significant" growth just wasn't necessary to push her over that edge. A functioning bile duct was irrelevant. There was just not enough healthy liver to perform it's role normally as it had done days before.

Every day I woke up in the hospital on an uncomfortable, pull-out easy chair, and I would immediately look to Megan to gauge her skin color. Periodically, I'd ask to see her eyes and ask her to look in a certain direction so I could mentally compare this eye to the last time I looked. At times I thought the jaundice was improving.

Unfortunately, this symptom was made all-too real during two of the happier moments of her stay. The hospital has a beautiful roof-top garden one floor below where Megan was staying. On Wednesday and Thursday, August 24 and 25, Megan, Mom Lally, Jocelyn and I visited this lovely little safe-haven.

On this garden roofdeck, in the natural light of the sun under a clear, blue, gorgeous sky, it was impossible to deny the affect of the jaundice.

Under the unfamiliar florescent lights of the hospital room, with shadows cast by strange medical equipment, and the close-by, surrounding buildings, it was easy to look at Megan and think that maybe her eyes looked a little clearer today. Maybe her skin is looking a little lighter. I think I can see that the Bili is slowing!

Here in the 6th floor garden, under familiar, natural lighting, the affect of the bili and the condition of jaundice was undeniable, and yet, it didn't really matter. We were surrounded by exotic plants and flowers, and BoBo the topiary-bush-bear,and a Babar-like elephant and a seemingly magical frog. The wind was blowing through Megan's hair, and although it also took with it tears from each of us, we were together, holdings hands, in a beautiful place with a smiling-Megan. And that was very special.

There was one other significant symptom making it's presence known that I'll begin with in the next post.

One final note: I'm not really a doctor, I just play one on the Internet. I took a page from Megan's blogging playbook and have attempted to summarize some of my Google-findings that I've queried using my knowledge and experiences of Megans situation. If I've managed to mangle something, feel free to reply and set the record straight. Thanks for reading.

More Posts and Megan's Interment

I've decided that I need to continue to post until all of the details of the days leading to Megan's passing are well-documented. In April of 2008, when Megan was first diagnosed, there was much Googling performed to get some sense of what to expect about the path ahead of her. The information that was found was very much valued, but varied greatly in technical breadth and depth, and the first-person accounts were few.

As her treatments began, Megan was blogging to communicate her health updates with loved ones, but the blog was initially marked as private. Although a "login" was not required, Google and similar sites were not regularly indexing the site, and thus the content was not searchable. After treatment of her primary diagnosis, Megan decided to make the blog public so that others might read, and learn from her first-hand experiences when performing exploratory Internet searches just as she had once done.

It is this desire to add to the written-record of experiences that others can draw from that compels me to continue writing. I apologize in advance, as this could be too much information for some of you, but I need to do this to hopefully allow someone else to learn from these experiences and also to complete the already well-documented journey that Megan began three and a half years ago.

I have written much of this, and in the coming days I will begin to post. In the meantime, I leave you with a few pictures. I hope posting these is not considered in poor taste, but I wanted to share how beautiful Megan's plot looked on the day of her Interment (Tuesday, September 13) and the day after. This is at Hope Cemetery in Worcester, and if you would like directions to her plot, just let me know.

 A permanent marker will adorn this plot in the near future. For the short-term, a temporary marker provided by the funeral home can be seen.

Thank you for all your continued thoughts and prayers.

Megan A. Lally (10/9/1980 - 09/01/2011)

Rest in Peace, My Love








http://www.legacy.com/obituaries/telegram/obituary.aspx?n=megan-antoinette-lally&pid=153481463

Visiting hours for Megan will be Thursday, September 8 at Mercadante Funeral Home in Worcester from 5-8 p.m.  A traditional Catholic Mass will be held for Megan on Friday, September 9 at St. Joseph's Catholic Community in Fairhaven, MA at 10:00 a.m.  In lieu of flowers, donations in Megan's memory may be made to breastcancer.org.