Getting here

 

We've grown accustomed to receiving drive-by hugs from the nurses here -- their hugs being a testament to the level of care they provide, as well as proof that we've been here a while.  Random hugs from nurses-come-friends are just what I need these days.  After talking around the main thing for over a week, we finally discussed mom's prognosis and end-of-life wishes.  Though it's been a long journey getting here, we -- including mom -- couldn't be rushed. 

As D and E have mentioned, the past week has been the proverbial rollercoaster, with as many twists and turns and direction changes as the creaky Kentucky Rumbler.  We've entertained a variety of opinions - some good, some not so good - and have gone head-to-head with some of the best here.  Though we appreciate frank talk - I prefer it over Pollyannaism - we're typically looking for something a little peppier than the Grim Reaper/throw in the towel speech, and a little less vague than the "there are known knowns, unknown knowns, and then unknown unknowns" drivel circa Don Rumsfeld. 

Last week, we were saddled with more of the Grim Reaper "your mom has a few weeks to live; better to take her to hospice now" variety, given to us by an insensitive oncology attending out in the hallway of the 11th floor oncology unit.  Location, location, location.  The attending expressed his opinion that mom was nearing the end of her process, and that we should terminate chemo and other drastic measures so as to avoid another Terry Schiavo.  Emotional intimidation, always classy. 

We've known since August the gravity of mom's illness.  The prospect of her death comes as no surprise.  What we bristle at is not the content, but the manner in which people so carelessly frame mom's wishes.  We have no interest in keeping mom around for our sake, but do have an interest in honoring her wishes to be kept alive if is she's cognitively here - a fair request, me thinks. The problem with opinions is they cost nothing to hold, and nothing to change, especially for those on the periphery of this experience.   D and I spent most of last week countering the local Flash Gordon's (not just one) with our own assessment of the situation:  that mom is very sick and likely nearing the end, but that she is still cognitively there, and has indicated her wish to be alive - sans tube feeding, resuscitation, etc. -- until she is.

Though we received a handful of "are you sure looks" and "dying with dignity" lectures - whose perspective on dignity really matters, the patients or the doctors? - we were finally able to make headway; this week has been categorically different from the last, both in pace, and in intensity.  With each encounter, people have gotten to know mom and see her for the person she is.  As they have, they've come to a different understanding of the situation, and have sidelined their own biases for mom's stated wishes.  I credit mom's nursing staff and two doctors in particular for that momentum swing.  Mom's new attending, who also treated Craig, has a knack for making uncomfortable things pleasant.  Her neuro-oncologist has also been extremely supportive of mom's wishes. 

With their support, we were able to discuss with mom her prognoses, and subsequent wants and wishes.  And on Friday, we were able to have perhaps the most meaningful conversation we've had with mom.  E and I sat with her early morning, and talked with her about her death - a pretty brave conversation for all of us.  I remember watching Erin stare at mom, her eyes a crystal blue from all the crying -- we were crying, and that was okay.    I told her that I love her; that she's bigger than life; and how proud I was to be her daughter. I told that we'll be okay, and that we'll make sure Craigy will be okay.  E and I told her that we'll look after Dad, and stand by him the rest of the way.  We were also honest.  We told her that we wished this wasn't happening to her, and that there was more that we could do.  We told her that she'll live on in all the hopes and dreams of the Upward Bound students she touched along the way; in all that we accomplish and aspire to be; in the women we become; and in the lives we will lead as sisters, daughters, friends, and hopefully, mothers. 

She said she wasn't in pain, and that she was proud of us.  And that there weren't any loose ends that needed tying.  She said she loved us, and that she'll be okay.  To write this is painful, yet beautiful.  There's beauty in the love we continue to have, in the moments we share, and the process we're all experiencing.  Mom is showing us with each day what it means to die with dignity.  She's showing us there's a grace to the process.  May her grace continue to live on long after ... -- J