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.