Ellen Time

We’re living in what midwife Michelle calls “Ellen time,” floating through each day with each hour calling us to be fully present.  For the past ten days or so, Ellen has been speaking with more facility, had longer time periods of alertness, and been quite active physically, getting up many times a day and moving about from bed to couch to chair to bathroom.  While she’s more alert, she’s occasionally unclear and confused.  Eric, Kathryn, and others around Ellen are appreciating when she communicates a full idea and we often find humor in what she says, which is good for the soul.

Here’s one example:  For years, Ellen has been going to peer review each month in Saugerties, greatly enjoying these get-togethers where midwives share resources, discuss concerns, analyze complex cases, and otherwise support each other professionally.  At the September peer review gathering, the midwives celebrated Ellen, bringing stories and poems and Ellen’s favorite varieties of chocolates.  Then on Sunday, midwife Birdie came to see Ellen to share with her about that special gathering in her honor and to pass along some poems and cards.  As Birdie was getting started, Ellen commented, “Just tell me a little bit, because I don’t want to get too jealous.”

Here’s one that got a hearty laugh out of Eric:  Ellen said to him, “Would you please get me my … heavy … volunteers?”  “Oh,” says Eric picking up her sheepskin slippers, “Do you mean these?” (Yup.  How did he know that?!)

This one also brought laughter:  Jesse came home for a quick visit tonight and caught Eric in the midst of helping Ellen move from place to place.  “Spinning around, huh?” asked Jesse, and Ellen replied, “That’s what we do all day.”

It’s clearer that Ellen’s busy-ness is the terminal restlessness many people experience during this phase, and we’re feeling grateful that for Ellen, it’s not a frustrated or anxious state but a purposeful and peaceful state, with her going about her business.  Today nurse Elizabeth noted a couple of other “transition” symptoms like signs of decreasing blood circulation.  She asked Ellen if she has any anxiety about dying and Ellen responded that she does not, which was good to hear.

Ellen readingHere is one of my favorite photos of Ellen, taken one time when we were at the Cunuñacu hot springs in the valley below Quito, Ecuador.  Do you have a favorite photo of Ellen you’d be willing to share with the family?  If so, please send high-resolution versions by email (don’t worry about MB size) to Ellen’s sister Deb at debra@huntermorgan.com.  If you can provide the date, location, and names of others in the photos, that would be helpful.

Generosity in the Quiet

This week continues the pattern of quiet.  Many hours of resting, drifting, eyes opening to acknowledge who’s sitting with her, sometimes a smile, and always response to what’s funny. And the big blessing, much less pain.  Some discomfort, but usually shifting and adjusting this or that makes things ok.

BEllenut the real story I want to share is generosity.  Earlier this week, Ellen acquiesced to being carried downstairs in the wheelchair and joined the crew for regular Tuesday family dinner.  Even though we toned down the usual rowdiness, it was clear that it was all a bit too much, and she didn’t even want anything to eat.  But she did it as a gift to us.  When we left the table, I asked if she would like to go out to the porch: nod.  After wheeling her out and sitting there in beautiful moonlight and breeze, just the two of us, just gorgeous, I realized that I hadn’t done something for her, by helping her out there, but rather that she knew I wanted that moment and was giving it to me as a gift, as she was ready to be back upstairs, tucked into bed.

As you know from earlier posts, Ellen has suffered some form of cerebral damage, either from the various therapies (radiation and chemo) or from a tumor (14 brain mets) that makes sentence production difficult.  The first half of a sentence usually gets out fine.  Examples are “can you get me…”  or “we need to…” or “remember that we should…” but the clincher, the thing that would tell us what she wants done, or how make things better, just doesn’t come, or comes out wrong.  At first, this was deeply, deeply frustrating, but this week I see a generosity settling in, toward those of us trying to help by guessing and getting it wrong (which doesn’t actually help because more words in the space just confuses things, so we’ve learned not to), but towards herself too.  Here’s a quintessential example from yesterday:

She said: “Can you please get me,” pause, “a white,” pause, “tripe?” And then, almost immediately, this beauty: “Boy, it would be funny if you really got me that!”  I never figured out what she wanted me to get her, and when I’ve asked her again if she’ll tell me, she gives me a sly grin and a head shake.  Hah!  More gifts.

Here’s a picture from the archives (2012) that reflects a bit of that humor and generosity.

Quiet Days

Ellen is having quiet days generally.

One nice change we’ve seen since a week ago is Ellen being more active and alert and doing a bit (a bit) less sleeping and resting with eyes closed.  Perhaps this is because it’s now been a month since she’s had a chemo treatment.  She’s also doing a bit more talking but the sentences are rarely complete and the meaning not clear most of the time.  We’ve tried offering Ellen pen and paper to try writing to complete sentences but found she had the exact same difficulty as with speaking.  So instead we’re all getting better at asking yes/no questions when Ellen’s wanting something, e.g., “Is it something to eat or drink you want?  No.  Is it something like clothing or bed clothes?  No.  Is it something in the bathroom? Yes!”  All those years of 20 questions put to good use.  But its also clearly very frustrating for Ellen, so we try to keep the questions to a minimum.

Ellen needs someone close by at nearly all times, either in the room with her or maybe in Eric’s office next door.  When she makes a move to get up out of bed, it’s good for someone to spot her.  The last 4 or 5 times she’s been unable to get to her destination (unknown to us) and sinks down onto the floor, then manages slowly to get back in bed, asking for no help but usually accepting some eventually.  You won’t be surprised at the determination she’s showing.

Ellen continues eating and drinking in very small amounts.  This morning she enjoyed more bites than usual (4 instead of 1) of a melon from our own garden.  She’s chosen to take reduced amounts of her prescribed medications, maybe because of difficulty with getting them down and keeping them down.  When she doesn’t get the later meds, night-time sleep is interrupted, but usually she gets a long, good night’s sleep.

With hospice care came additional equipment and medications, mostly to have on hand for possible need later. Elizabeth, Ellen’s fabulous nurse, continues to come (as she has for months already under the palliative care program), but now is coming twice a week.  No home health aides are needed at this point, which I’m sure makes Ellen happy, as she much prefers care by her family and a few close friends, mostly midwives.

There’s a kind of peace and quiet that’s blessing this house in these days.  Lots of sitting and being.  Less doing and solving.

Here are some pictures of Ellen from years past, just for fun.

Ellen and Natalie many years ago...
Niece Natalie with Ellen many years ago…
Jesse, Ellen and Will at the bottom of the grand canyon.
Jesse, Ellen and Will at the bottom of the Grand Canyon (2014).
On a hike in Vermont
On a hike in Vermont (2012)

Fifty Years Plus

EKH 50th Birthday 2
Jesse, Ellen, Eric, and Natalie and Cake!
Ekh 50th Birthday 1
Jesse, Ellen, Eric, Jens, and Kathryn plus Will’s leg.

Two days ago was Ellen’s 50th birthday, a bittersweet marking on the calendar of her life.  How immensely grateful we are that she was born on that special day in 1966.

Gina baked and brought over the spectacularly delicious chocolate cake you can see in the photos.  Ellen did enjoy a bite of the cake, which is saying something as she’s choosing to eat less and less.  Ellen was alert and smiled quite a bit as we serenaded her, and we read her birthday wishes she’d received, and heard her birth story from Kathryn, a tradition in our family.

Yesterday, Ellen was officially admitted into hospice care.  Many people want to come say good-bye to Ellen and we are sadly saying “no” out of respect for Ellen’s clear instructions not to have visitors.  We have been flooded with offers to help in so many ways, and we thank you, even though we find we need little more than to be with Ellen on her journey.

Your love surrounds Ellen and us powerfully – thank you so much.


My brain is less functional than before in these areas: keeping track of the day, date, and even month; peoples’ first names; medicine names; and how to run the very online writing workshop I designed and Eric and I wrote, launched, and upgraded over the last 10 years.  It is very depressing to try to do the few behind-the-scenes person-to-person functions with all the loss of ability.  Eric volunteers to do what I can’t, but then I don’t know whether things are done, and whether they are done the way I would want them done.  (That would be “the right way.”)

The same thing is happening all over my life.  Housekeeping, clothes-buying, finances, bill-paying.  The shift is challenging me to let up my grip, be okay with things done a different way than mine, and  trust Eric more than before in realms we both (I think) agree I am more skilled in.

Brief clinical updates

Just to share some clinical updates, since I am sitting here hooked up to chemo for what feels like the 8th hour in a row (it’s actually only the beginning of the 4th hour but geez, they are running s-l-o-w today):

• intrathecal methotrexate has vanquished its target cancer cells for now—I am down to one MTX dose every other week from starting at 2 per week in the beginning of February.

• still getting combo of gemcitabine & carboplatin 2 wks out of 3. This switch from my original chemo, Eribulin, was made last fall. Eribulin sure worked for a long time (19 months?).

• still getting bone-building helper drug Xgeva/denosumab every 28 or so days too, because it might help prevent bone mets.

• I signed up with a palliative care nursing program and now I get seen by a visiting palliative-care nurse weekly at home, plus access to a physical therapist, social worker, and chaplain if I want. All at home which makes a HUGE difference. There are significant parallels between homebirth midwifery–all sorts of authentic midwifery–and hospice nursing care.  Of which this palliative focus is the first stage.

• through the palliative care program, I found a pain-management MD to handle all my pain problems/pain meds centrally.  Too bad she practices in Mass.!

• At her advice, I went off amatryptilline–one pain-relief med–and my increased dizzy spells decreased again, yay (both in frequency and in severity).  So I guess that was the final straw (many of my meds say “May cause dizziness”).

• I switched in May from morphine to methadone for my main pain relief, hoping to get more solid relief with less fogginess.  So far, same level of incomplete relief, less fogginess.  So now we increase the dose to see if I can get better relief.  Areas that hurt: left knee, currently broken left foot, both hands (numb and clumsy and touching most things now hurts (like popcorn and velcro). Back less than before.  Headache much less than at its worst.

• The big thing going on, besides the 3 broken foot bones, is fatigue of both mind and body, and shortness of breath (likely due primarily to lung mets, but we’ll find out more at my next scans).  I don’t go out much.  When I do have a day that includes more than one or two events, I need to rest up afterwards–and beforehand if I’m smart.  I am slowly getting used to this.  It is still sad, though, how everyone around me has redefined a “big day” downward over recent weeks so that a current big day contains the same number of events an easy day used to contain.

What’s been slowing me down

My weak left ankle turned outward on me for real last Friday, after weeks of threatening to do so, causing an impressive tumble to the floor in the bathroom.

Just wrenched and swollen?

By the next day it hurt in a bigger and more focused way, so off we went to the nearest Urgent Care place.

I will spare you all the details but after a visit to the orthopedist on Monday I now have this at the end of my leg for 6 weeks:

don't let the foot move!
don’t let the foot move!

Makes everything harder.  I have to use the purple walker to take the weight off that foot and this coming week will rent a small wheelchair.  Sigh. How this affects our Montreal plans I am not sure yet.  Eric thinks we should just go anyway, June 3 through 6.  I don’t see why we couldn’t postpone the trip for a couple weeks, until I have less pain and hassle.


I can’t walk well right now because of my numb and untrustworthy left foot and ankle; because I get big dizzy spells when I try to walk after sitting for 45 minutes or more; and because I get out of breath from just the effort of walking.

A few days ago I scolded myself silently, again, for being so darn stubborn, and used a motorized cart at the grocery for the first time. I don’t want to be seen as someone who needs one of these at the store.  But now I am.  It was helpful and I got to do the shopping with my friend Lisa instead of either wearing myself out trying to walk the whole store or waiting in the car.  And on my maiden voyage, aka learn to drive this weird vehicle, I only ran in to one thing.

Giving in to the cart
Giving in to the cart



And, and, and I actually ordered a walker today.  I was convinced to try it once I saw a model with a built-in seat–handy for dizzy spells–and made of purple anodized aluminum.

Mobility being my biggest challenge right now, I guess I will throw tech at it.