The days between

When you cock only half an ear, it’s hard to tell if mom’s laughing or crying -- you have to give her face a glance to discern the two.  Today, she’s been laughing, and I think more AT us than WITH us.  Like always, we’ve been serenading her with our off-the-wall sing-alongs.  I asked her if she felt trapped; her response:  yes (but between smiles).  As much as she heckles, she's more alert when the three of us are around.  Call it the noise, but I think she enjoys seeing her girls goof around, and we enjoy seeing her eyes smile when we do.  But, we have our sad moments as well.  The day Erin arrived, E and I spontaneously started singing one of mom's favorite Dionne Warwick songs and she began to cry half-way through.  Mom continued to look at us with these intense eyes as we sang "In the morning I wake up, before I put on my makeup, I say a little prayer for you."  It was as if she was burning the image into her memory.

We’ve been enjoying these moments together, and taking each day as they come.  She's been in the hospital a week now, and will continue to be for at least a few more days.  I’ve been reading her favorite Patricia Cornwell to her, and though I’m the only one actually following it -- she usually falls asleep within five minutes of my reading -- I enjoy reading to her, and she seems to enjoy listening, even if my droning voice does put her to sleep.  (I’m a natural sedative, what can I say.) Just seeing her eyes light up when I ask if she wants to hear another chapter provides the impetus to continue (with the torture, as E and D would say).

And much to their annoyance, the “torture” will continue at least for a few more days. She’s scheduled to have a lumber tap tomorrow, which will help alleviate pressure in her ventricles.  It seems the so-called dam, which was constructed back in August to prevent her cerebral spinal fluid (CSF) from leaking into her brain, may have burst.   The CSF and tumor have been “communicating,” as the neurosurgeon likes to say.  What they’ve been saying to each other during their little chitty-chats is not yet known. Nor are we aware of whether the cancer cells have spread throughout her spine -- her last spinal MRI was negative. (The doctors have said that this is a slim – emphasis on slim – possibility, so we're not too worried.)

The lumbar tap may alleviate some pressure, and may help mom with motivation and activation.  Since her seizure, she’s been on a steady decline and is now unable to move without assistance, and can only eat pureed food.  Finding the words to express her thoughts and feelings is, of course, a challenge.  Reducing her CSF may improve her motivation/activation for speaking, eating, and perhaps moving – in other words, her quality of life.  After discussing this with her doctor, mom agreed to give it a try.  The procedure is minimally invasive, with few side effects, and will be performed at her bedside.  We should know within the next few days whether it’s had an effect.

Our goal is to support mom in her wishes to have a “quality life.”  It doesn’t matter the days between, only how she feels, and as long as she continues to express her desire to continue with treatment, we’ll support her in that decision.  And when the time comes she’s unable to communicate her wishes, we’ll do our best to do right by her and to honor the beautiful woman that she is.  Thankfully, the six of us are all in agreement on what exactly that means.  Our close family bond has not gone unnoticed; we realize how fortunate we are that we enjoy each other's company, and have a good sense of each other’s wishes.  It must be comforting for our mom to see the five of us continue to rely on each other for support during this difficult time.  In the end, we'll be okay because of that bond, and her mentorship. I hope knowing that is of some comfort to her. -- J