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

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.

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?

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.

Love,

Mommy/Spee