Sunday, September 25, 2011

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.


4 comments:

Erin said...

Rusty, thank you for sharing all of this. I'm sure it's very difficult.

Mom said...

Rusty, thank you for putting the beautiful moments in the garden into words. I will cherish the moment for a long time. Love, Mom Lally

Jeanette said...

Your writing is beautiful, Rusty. Thank you for putting down all of these details and sharing them here.

Unknown said...

Thank you Rusty!