Empty and Full

Since Leslie went on hospice, we’ve had few days when there weren’t houseguests.  With Caroline back in Boston, and Emily back at school, and a lull before the next out-of-town visitors, it’s just the two of us for a week, with drop-in visitors.

This gives me a moment to reflect on “empty” and “full.”

Full is Leslie’s voice piping up over the banter, from what appears to be a deep sleep, with just the right word or to correct a faulty recollection.

At the same time, full forces the recognition that an engaged, articulate conversationalist is trapped inside a slowing mind, struggling to complete thoughts and retrieve words.

Empty, as they used to say in cowboy movies, is “quiet. Too quiet.”  The foreshadowing curdles the stomach.

Empty is having time and space - but not focus or energy - to say the things you want to say, to discuss the things you know you ought.

Full is a set table and serving dishes, and maybe even a bottle of wine.  (It’s also covertly reloading the dishwasher to my compulsive standards…shhh.)

Empty is eating whatever you want, whenever you want, wherever you want.  Unfortunately.

Full is a street parade on a lovely day – one person pushing Leslie’s wheelchair, another towing the oxygen, and more lagging behind, in conversation.

Empty is “the fox, the chicken and the bag of grain,” calculating how to get Leslie, her walker and oxygen, and everything else she needs from upstairs down, and back again.

Full is a jigsaw puzzle on the living room floor; empty is overdosing on MSNBC, to have another voice in the house.

Full is exhausting, but empty is enervating.

Of course, empty can also be full, given the prayers and thoughts that beam down on us daily from cyberspace, the phone and the mail.  They continue to be very much appreciated.

A Foreman in the Great Chicago Tradition

I promise a full blog post soon, but for the moment I wanted to share two pictures from this afternoon.  Our friend and Leslie's fellow teacher Di Bloom dropped by with her daughter, for a visit, and offered to do some spring garden cleanup.  We decided to all work together, with Leslie guiding the work from her chair.

She was, as you'll see in the photos, born to supervise, Chicago style, enjoying her drink while we worked!

(If you click on the top picture, can shift the focal point to wherever you click; if you double click on a spot, you'll zoom in!)

Long, Warm Days...

Leslie's been after me to post something to the blog, if only to say that she's comfortable at home, and getting great care from the hospice organization, as well as from visiting friends and family.  She sleeps quite a bit, and we're trying to cut back her pain meds just a touch, to see if that wakes her up.

Usually, she gets up in the morning, dresses and comes downstairs for the day.  In the recent hot weather we've had here, she sometimes sits on the porch, but often she holds court in the living room hospital bed.

Caroline and I work nearby, and we have friends in as often as possible, as Leslie likes the sound of voices even when she isn't awake enough to participate in the conversation.

Emily is back at Pitzer and working on her newest piece of choreography, Caroline is headed to Boston on Saturday, and Leslie and I will share a few days on our own before the next visitors arrive.

As we all fill the quiet days, it seems everyone in the house is learning new skills.

More soon.

 

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The Look of Love

A word cloud drawn from all of your messages.

Thank you all for your amazing messages of love.  We've heard from our families, childhood friends, college friends, grad school friends, work friends, ballet friends, running friends, travel friends, parenting friends, our kids' friends, and more.  Some of you we've known for ages and some we've known only briefly.  Leslie has trouble focusing her mind to read, so we are reading your messages to her, as her attention and emotions permit.

Two things move me, in particular.  One is the clarity and specificity of your memories, even when recalling moments from decades ago; clearly, time spent with Leslie is recorded in indelible ink, or perhaps vibrant oils.  The other is how many common themes emerge in your recollections; the one that resonates most with me is Leslie's ability to speak truth to power (including telling many of us - myself included - things we don't always want to hear, but need to).

My sister Kathy, after spending a few days here visiting, has taken up a new mantra of "say it now."  Don't wait until someone is sick before telling them why you value them or what they have meant to you.  I hope others of you will adopt that, as well, just as you've done so eloquently and intimately for Leslie.

A Spring Haiku

Deluged – a March flood,

As friends unleash a torrent.

Tears…laughs…pure Leslie.

Gardening takes too much energy, but Leslie can still supervise.

Jess, Leslie's trainer, leads an expedition on a lovely day.

Here comes the choo choo...

Bungee Jumping

The fall was fast, but the snapback was equally dramatic.

On Thursday afternoon, while waiting for radiation treatment in the company of a friend, Leslie had sudden trouble breathing.  She'd had a great morning, puttering around the house doing things for herself, taking a short nap, eating well.  We'd talked by phone a few times and she was clear and focused.

Now, though, I was getting a phone call from our friend saying that Leslie was in distress, but doctors were on the scene.  I was already on my way home from work, but soon had another call saying Leslie, her mom and Lisa were in the ER (we're elite members of their frequent stay program, at this point).

I found Leslie in a bay, with an oxygen mask cranked to full, but still laboring to breathe and struggling to voice coherent thoughts.  Through the afternoon and into the evening, she had blood work, a chest x-ray, and then a series of visits from the GynOnc and Palliative/Pain teams.  With Ativan, they were able to get Leslie drowsy, though still gasping and tense; her fists were clenched so tight she kept disconnecting the fingertip oxygen monitor.

In the early evening, the lead doctors from both teams came to us together, to say that Leslie's body was working so hard to stay oxygenated, even with help, that they feared it couldn't sustain the effort.  The x-ray showed no signs of metastases or pneumonia, so they could only posit either that the cancer load in her belly was forcing the body to overwork, or that her form of cancer throws off tiny clots that even Coumadin couldn't overcome.

The doctors put Leslie on a Hannibal Lecter-style high-flow oxygen mask that they said could only be used for short terms, and that was a measure short only of intubation, which we'd already rejected. 

This was the moment that I'd anticipated with dread - the "call the girls home" moment.  Through tears, I talked with Caroline and Emily, helped move up flights (they were due home this weekend in any case, Caroline for a long weekend and Emily for spring break), and called Leslie's and my siblings.  Leslie's mother - here since Tuesday - cancelled her planned return the next day.

We sat by the bed and watched anxiously for signs of ragged breathing.  We whispered things to Leslie that we didn't want left unsaid.

Late that evening, they moved Leslie into a room, with a cot for me.  By the time intake was finished, and an added dose of Ativan kicked in for Leslie, it was almost 2 am, and we both drifted off for a brief sleep.

By 6 the next morning, the bungee cord had reached its nadir and snapped back.  Leslie woke up clear-headed and breathing more normally.  They took off the mask to give her meds, and her oxygen level remained where it ought - between 95 and 100.  The mask stayed off all morning - she didn't even need a nasal cannula - and her levels dipped into the warning zone only when Leslie gave hugs to arriving friends and family.  She sat up in bed, ate breakfast and entertained friends, family and staff with full engagement and humor.  It was as though the previous night was a bad dream.

That said, we are clear-eyed and have no false hopes.  As the GynOnc doctor said on rounds yesterday morning, the situation is still pretty dire.  So, yesterday afternoon, we came home officially transitioned to hospice care.

Leslie now holds court in a hospital bed in the living room. Oxygen tubes snake out of our bedroom and down the stairs.  There are new meds to support the goal of managing pain and anxiety.  Today, we'll start regular home nurse visits, and emergencies will be managed first through the hospice agency - no more ER trips.

In some ways, this extreme scare was helpful - it's forced us to ask what needs to be asked and say what wants to be said.  For some time, we've known the trajectory, but the shallow slope of the line to now masked urgency.

Let me encourage you, dear readers, to accept the urgency, as well.  It's easy to say nice things about someone who's no longer there to hear them; why is it so much more difficult to say them directly?  This week, we received an e-mail from a family member with whom Leslie built a special and helpful relationship; it meant so much to Leslie - and to me, as well - to hear how important their friendship has been.

If there's something you'd like to say to (or about) Leslie, do it now.  Phone calls are difficult, and you need not post publicly here; send Leslie an e-mail at leh6@midway.uchicago.edu and/or send it to me at dkleeman@atgonline.org.

Umbra's Security Service: I got this.

One Step Forward, Two Steps Aaaack!

Spring may be coming to Chicago, but here we're more concerned about fall.  A tumble last Saturday night - likely a combination of neuropathy in the feet and imbalance from pain meds - left Leslie with a broken bone in her foot.  She's getting around in a boot and using a walker, and moving pretty well.

To start at the beginning, on Saturday night, after a good day of visits from friends, Leslie went upstairs while I prepared dinner.  Suddenly, I heard a thump and a cry.  Leslie had fallen in the bedroom and hurt her foot.  It seemed unwise to try to get her up and onto the bed, so I covered her with a blanket and called 911.  The EMTs showed up soon after, and we had a debate over whether to take her to the University of Chicago Hospitals (ostensibly on "bypass") or to Mercy.  Given that the foot injury was going to have to be merged into the whole suite of medical professionals and treatments in Leslie's life right now, we convinced them to try the U of C, and in fact she was triaged quickly and ushered to x-ray.

The initial images showed no break, so Leslie was given a plastic brace, wrap and walker; by that time, though, she'd gotten anxious and a little delirious, so they kept us until about 3 am for observation, then sent us home.

Monday, we had a call from the ER, saying the weekday radiologists often review images from the weekend, and in our case, thought they did see a break.  Leslie's primary care physician was able to get us in quickly for a CT scan of the foot, as well as a follow-up appointment on Thursday with a good orthopod.  Given that Leslie is in palliative care, it didn't seem to make sense to operate on the foot, hence the boot (replacing the brace).

It's been an up and down week, overall.  Leslie's getting daily, highly-focused radiation on her primary tumor, and it seems to be having its intended palliative effect.  She is able to sit upright for longer periods (pre-radiation, 30 seconds was about the limit; now, she can sit through dinner).

Still, sleepiness is a primary side-effect of radiation treatment, and coupled with the daily trip to the medical center and home, she's really tired.  Add in CT scans, foot doctor appointments, blood draws and more, and the result has been a couple of breaks with reality.

The scariest was on Tuesday, coming home.  It was clear in the car that Leslie wasn't thinking straight, but when she tried to get out of the car (into my arms, not on her own) her legs buckled and she fell (gently) to the sidewalk.  She immediately became agitated, making it more or less impossible for me to lift her.  Fortunately, a friend happened to be walking down our block and helped me lift Leslie and get her inside.  By that time, she was shock-y and shaking; even a dose of calming medication took an hour to have effect, and for the rest of the evening, she veered between sleep and incoherent chatter.  From 4 on Tuesday afternoon to 11 the next morning, Leslie slept almost straight through, waking only for bathroom trips and for a small breakfast.

After another, similar lapse today, her palliative care doctor concluded that low oxygen level was the likely culprit in her downward spirals, so we now have a rather noisy oxygen machine whirring away in our bedroom, and several tanks of various sizes (given that they're to keep her mentally connected, would they be "tanks for the memories"?).

We're also switching Leslie's pain meds from morphine to dilaudid, which the doctor thinks will lift the mental fog somewhat.

Nothing has been so hard on Leslie as the mental fuzziness.  Those who know how articulate, quick-witted, thoughtful, detail-oriented and analytical she has always been can well imaging that Leslie is frustrated, sad and angry at not being able to hold ideas, process questions or decisions, or recall words.

For all her friends who have been sending cards and e-mail, please keep doing so.  She absolutely loves reading your messages, including newsy updates on what's going on in your lives.  The exhaustion, however, makes it hard for her to focus on replies, so please don't feel offended if you don't hear back.  She -- and I -- are feeling all the prayers, wishes, thoughts, karma rockets, light...whatever you choose to send, and we hope you can feel the love that is returned to you manifold, even if we can't always put it in writing right away.