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.

Shifts and Changes

Things have shifted quite a bit for Ellen in the last two weeks, with notable further cognitive decline (mentioned in her previous blog post) and turning inward.  Ellen spends most of her day resting with her eyes closed and will open them in response to a greeting and sometimes engage a bit with whoever has appeared, although often she is not lucid and/or not able to get out the words.  Hand gestures and facial expressions are becoming important modes of communication.  However, from a few on-point contributions she’s made to conversations going on around her, we can tell she’s listening and still has her sense of humor.  When Spee told her, “I’m just removing this bug from your grapefruit juice,” she replied, “That’s probably the only protein I was going to get today.”

Indeed, Ellen is eating and drinking very little now.  In recent days, she seemed to have less pain, discomfort, and nausea, which is a relief.  She does get up and around a bit, although her mobility is decreasing steadily.  On the list of “no longer doing” are using the computer, looking at her phone, reading, and getting tasks done like putting stuff away in its place.  However, when something is out of place, she’s still pointing and giving us a meaningful glance and is clearly satisfied when we take the appropriate action.

As of three weeks ago Ellen started a “chemo holiday” as the side-effects just became too much to bear.  This last week we’ve had lots of discussion about starting hospice soon, which will probably happen early next week.  Those of us caring for her have been reviewing her “Five Wishes” document (advance directive) about end-of-life wishes for how she wants to be made comfortable, how she wants people to treat her, and what she wants her loved ones to know.  She wrote, on the one hand, “As I am dying, I want people to be informed as to what is happening.  Clarity and frankness about the situation as it unfolds is very important to me.  My loved ones and friends should be able to find out what is going on with me, to the extent that they want to know,” and, on the other hand, “I hope that my loved ones can come to remember me for what I was like before I became seriously ill, rather than just remembering the last part of my life.  I want them to remember me living rather than dying.”

We are grateful for all the thoughts, care and holding in the light that we feel from all of you coming our way.

-Eric & Spee


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.

Back to the grind

Coming to you live from the chemo suite! Our trip is over and we’re slowly getting back into the patterns of normal life.  Which of course include chemo.

It seems like Jesse grew an inch while we were gone. They are interested in helping me out, which is fun. This afternoon they pushed my chair for a bit because Eric had to park the car instead of coming in with us. I wanted a picture.

“hanging in”

That’s what I tell inquirers when they ask how I’m doing and I have nothing to say that is particularly interesting.

So over the past week it’s been pretty much like that, except for good news from my recent MRI and CT scans: nothing known to be new; nothing bigger than last time; lots of things–and by things, we mean tumors–that stayed the same size.

Maybe some other notable things happened this past week, but I just don’t remember them at the moment. Chemo is weakening my memory for sure. However, at least now you know that I am still around and still hanging in. Or a reasonable Internet facsimile is.  But ouch.  Would a mere reasonable Internet facsimile have such intense back pain and complain about it this much?

Weekend excitements

This morning I woke up at 8.  It’s 10 am and I have already:

  • had bad back pain and gotten Eric to rub my back before putting on the three-times-a-day pain lotion
  • slathered my fingers with another kind of pain lotion because they hurt in a bad-cold sort of way
  • thrown up out of nowhere
  • tripped on the walker I was leaving at the top of the stairs, had nothing to grab or break my fall with, and landed flat on the floor kind of howling
  • wondered, at the end of all this, why am I hanging in…

Maybe soon it will be time for breakfast?

Yesterday we went to Shivani and Jon’s wedding.  This sounds simple but it wasn’t, and almost all the ahead-of-time detail work that made it as simple as possible for me was thought of and executed by Eric with generosity and self-motivation.  I am lucky in my long-ago choice of partner, for sure.

The wedding was at 11 am by the side of Ooms Pond.  It was a chilly summer morning but, politely, it only rained for the actual ceremony, not the waiting time before or after.  It was a light rain and its biggest annoyance was that its noise on umbrellas made it hard to hear the vows.

I sat in a big collapsible chair borrowed from Emilie and tried to take some interesting pictures.  I got wet but not too cold and was very, very glad to be there and feeling all right (other than tired).


teens at wedding

Guest post: Spee’s update

Spee sent out this update last week by e-mail, and I thought it was worth putting on the blog to fill out the picture.

Hi, family and friends –

It’s been a while since I’ve sent out an update because of more frequent blog postings by Ellen and some awkwardness there.  But today I spoke with her about this and described the need, and she released me to update you all freely.

What’s happening first and foremost is that Ellen is slowly but steadily declining, but still hanging in there.  She is increasingly tired and disabled, with decreasing stamina, more frustration and anger, reduced cognitive functioning, and more withdrawing.  These are small increments but especially noticeable to those of you who see her less often than I do. 

Ellen spends much of her time in bed, but tries hard to come down for meals and occasionally do fun things like go for ice cream or to an event.  Of course, she has many medical appointments and she is able to get to most of these, with Eric or Kathryn or someone else as driver and companion/helper.  She uses a walker that has a seat onto which she can rest whenever she wants, and that helps a lot.  She has a wheelchair, but really doesn’t like to use that.  As you may have seen, Eric rented a scooter for her use in Montreal and that worked out quite well (see the recent blogpost about the trip).

Ellen is now taking methadone regularly and one question is how much that might be contributing to her increasing tiredness and other worsening symptoms.  The visiting nurse Elizabeth says that methadone could be a factor, but the most influential factor is likely the week after week, month after month doses of triple chemo.  There could also be disease progression as well, she says.  In addition, Ellen’s broken foot is healing slowly and still causes pain, which gets her down.  Ellen is committed to continuing the chemo as long as it’s keeping the cancer in check.  This coming Tuesday she’ll have the routine scans to see how that’s going.

In other news, Will is enjoying his summer grounds-keeping job at Buxton School.  He comes home most weekends and brings upbeat energy into the household.  This morning, he, Eric, and Jesse were happily making a big brunch while music blared in the background.

Jesse is home for the summer and spends much of their days in the basement on the computer.  They also watch TV with Ellen about once a day, with the two of them enjoying snuggle time and conversation about what they’re watching.  Jesse has lots of appointments that get them out of the house and they have a volunteer job they really like, which is volunteering once a week at a wildlife rescue center. 

Eric is tired and he requests that people stop asking him, “So how are YOU doing?”  He is taking care of himself by running regularly, taking one 8:00-8:00 day off each week (what we call Woodstock Wednesdays, currently with Helen and me covering), and playing squash at Simon’s Rock on Mondays and Wednesdays while Anne and Sandy are covering dinnertime.  He continues to prefer to spend a lot of time with and caring for Ellen over working or doing household chores, so the help that others are providing the family is generally in the realm of household functioning.  It seems they’re ready for the extended circle to start contributing dinners once a week, and Sandy will arrange this with Chris De Roller.

As for Helen, Gene, Jens, and me, we gained access in May to more people trained in hospice and available to those around Ellen, even though she isn’t on hospice.  We’ve benefited from time with both a social worker and a chaplain, who are part of the same team as Elizabeth is on.  We also have super help from Maizy, who’s working about 25 hours/week supporting Helen and Gene mostly with driving and our household mostly with kitchen duty.  Natalie and Aaron also step up and step in in many lovely ways.

The “Rings Fellowship” that Emilie or Dee hosts every other week is super helpful.  We continue to be extremely grateful for that. 

I’m also grateful that Ellen is keeping some sense of humor, as we sure need that, and that she finds joy in looking out over the lovely meadows and forest that surround us.

While I’m on a gratitude run, I’ll add that I’m grateful that Jens is staying centered and spreading love, that Eric is maintaining his stamina and wonderful spirit, and that Elizabeth is such a terrific hospice-trained nurse that she can hold the most difficult conversations with Ellen.  I’m grateful to Kathryn, Ellen’s sisters, Helen, Gene, Sandy, and others who are constantly thinking with deep love about what else could be done for Ellen, Eric, Jesse, and Will.  And thanks to the rest of you for your waves of love and Light.  You make the journey lighter.



The view from Montréal

Eric and I ran away from home a couple of days ago (leaving the kids behind) to explore a little bit of Montréal for our 10th-anniversary trip.  So we’re 11 or 12 years late for our 10th anniversary…oh well. We made it at last.
20160625_111456Because of my broken foot Eric rented me a motorized scooter to get around in.  And we had to stay in a bigger hotel that would have little details such as elevators. And ramps.  And a minibar!

And views from the balcony to the east.


Backs of city buildings are fun to peek at.


This has been my first trip as a mobility-limited tourist.  Interesting. Hard to get over the extra attention.

Food: I wanted to do a lot of tourist eating here, but my guts complain bitterly if I overeat (which I have been doing a lot of lately). So instead I am trying to use this change of scenery and habits to learn not to overeat, to pay more attention to feelings of fullness, to order lighter food, etc.

We are about to go to Cirque de Soleil down on a quai on the river.  Mobility-impaired guests get good seats for a discount (so do their “accompagneurs”) as long as they can show up 30 minutes early.  Okay!

Tomorrow we will go on a boat tour and maybe also a bus tour.