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.