Liminal

With candles flickering on the windowsill beside Ellen and soft daylight fading outside, we enter a night with winter-time temperatures and marvel at how the seasons are changing so markedly during this period of Ellen Time. Ellen’s body continues to diminish before our eyes while her spirit fills up the room. We are grateful that we’ve succeeded in keeping her at home all these weeks, thanks to Eric’s dedication and that of the other caregivers, as well as the support from medical and hospice professionals.

Our records aren’t 100% complete, but it seems that the last day that Ellen ate a grape or two and took a sip of grapefruit juice or lemon tea was October 16^th. That’s when she started having trouble swallowing and that’s only been getting harder, causing occasional coughing that we try to soothe. Since September a year ago, Ellen dealt with edema (swelling) of her left arm and hand, and a few days ago we noticed her slender well-shaped hand reappeared. Unfortunately, that same hand is increasingly causing her discomfort, likely pins and needles and pain from neuropathy, and we’re exploring a shift in her medications to address that.

With steroids out of her system, Ellen’s high cheekbones and gorgeous jawline are once again revealed. Here is a photo of her lovely face, taken 27 years ago.

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.

Here 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.

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.

But 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.

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.

Niece Natalie with Ellen many years ago…

Jesse, Ellen and Will at the bottom of the Grand Canyon (2014).

On a hike in Vermont (2012)

Jesse, Ellen, Eric, and Natalie and Cake!

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.

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. Because 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.

Life keeps trickling by with nothing that calls itself out as news-worthy.  Aka blog-worthy.  The bar is higher now that one-handed hunt-and-peck is my main route of written-word production.  Using dictation software is also an option but it is hedged about with caveats and requirements.  I don’t always feel comfortable spooling along my thoughts for this blog aloud with others nearby.  If I am dictating and people walk in talking, the software picks them up and plops in some garbled version of what they were saying.  And even when it’s just me there are lots of errors to fix.

Yesterday was the International Day of the Midwife so maybe it’s time to share a bit on my midwifery research project that is on hiatus now but may someday be…rehydrated?…and back on the to-do list.

When I was diagnosed with metastatic breast cancer, I was about 2/3 through with a distance program for CNMs and CMs offered by The Midwifery Institute at Philadelphia University. I had been hatching my own research study based on my Philadelphia University research project, but I realized when presenting my work so far at the 2014 MANA  conference that my results really weren't a strong argument without  better data.  Luckily, as one of the architects of the MANA Stats Project, which provides a way practicing midwives can provide high-quality data on their care, I saw that where my data was lacking was also a general lack in the quality of our data. So we on the MANA Stats team added a few more questions and as of about a year ago, we have been collecting data that will work much better when analyzed for my length-of-pregnancy project.

I am excited about myself or somebody else re-running my study with this better data whenever it has been validated and can be used for research--pretty soon now, I think. That will be a big accomplishment, if I make it that far with enough mental stamina to keep on track doing that kind of analysis and writing. I will have help from my researcher friends who volunteer with me on MANA's Division of Research.  However, one thing I realized when I presented my work so far at the 2014 MANA conference, to an audience of about 40 very interested midwives:  that was maybe one of the best 90 minutes of my life. So even if I don’t get to continue with this particular project, I feel like for me that was the apex of it and I got to experience it without any compromises. I guess in some ways I am a teacher at heart.

So that’s what’s going on in the currently offline research mind of this "midwife scholar.”  Philadelphia University was sad to lose me as a student but they named a new research award after me to keep my name around.  First recipient? Me!

new research award

Over in the world of MANA, there is a new poster-presentation contest each year at the conference to encourage entry-level research and project descriptions. I have gotten involved in that, as well, and lo and behold, they went and named the contest after me. A very good way to get me to put energy into it :-)

One really lucky thing I see having happened in my life is all the work I did to get ready for the CM program and then the courses I took in the program itself. Things like pharmacology, which I did *not* enjoy and did not really see the point of at some times, have really helped me and served me well as I turn my concentration and what expertise I can muster to metastatic breast cancer.   Having a disease like this means, to me at least, becoming an expert in your own case and care. I do it not because I don’t trust my care providers, but because it helps me feel a little bit like I’m helping drive the bus. Even though this particular bus doesn’t maybe take much direction in the end. So although I had to give up on grad school, it has helped me immensely in the last two years, for which I will always be grateful.

I feel like I am a lemon drop being sucked on and getting smaller and smaller.

I spend lots more time dozing or just eyes-closed resting than I did a few months ago.  (But maybe that’s the effect of trying out morphine every 4 hours for pain?)  I have less and less energy for physical projects–i get worn out and have to rest or stop.

I am spending more time in bed during the day and less downstairs, where I have to admit it’s much harder to get comfortable.  Only when my picky body is comfortable and I’ve been resting for half an hour or more can I stop trying to ease what hurts and feel like “a normal person.”  Whatever that means.

I have less mental energy or stamina.  I can feel my mind getting tired.  It is hard to engage in conversations on complicated topics.  For a month or two I have been confused about day of the week, day of the month, and even what month it is and which one comes next.

What I’m trying to explore here is what makes for that lemon-drop feeling of there being less and less of Me, the Unique Ellen, in contact with the world.  I wonder if I will just melt away gradually.

I really enjoyed this column by Oliver Sacks in the NYT.

That’s today.  If there is a midwife in your life, now’s your chance to appreciate her!

On to less important topics.

I got some eyebrow-makeup advice from an unexpected source recently…yay!  Will have to act on that soon now that I am not so mystified.

I now have, below my right collarbone, a port, which once the incisions heal will only be minimally annoying every single day, I hope (while proving very useful for chemo and IV Vitamin C administration).  A port is a small reservoir under the skin that is connected to a tube that feeds into a vein.  Medications are injected through the skin (as with an IV), into the port and from there into the bloodstream.  There’s nothing outside the body (just a lump under the skin).  Seatbelts and ports do not like each other.  And it makes one pause before putting on a scoop-neck shirt.

The barn swallows are back in our neighborhood, nesting in our eaves as usual.  They are super fun.  No ewes have had lambs yet, but any week now.

And the semester (of midwifery grad school) is over.  All my grad-school friends are on-campus this week learning “birth skills”…I wish I were there.  They better ask lots of questions since I am not there to do so!

This has been the main question people have been asking.  So Round 2 of chemo starts tomorrow, continues next Tuesday, and then the week after that is my “week off” from chemo.  Then the next week, Round 3 starts.  Round 1 did not make me feel too bad, so I am not worried about Round 2.

In general I feel really good.  I am still “tapering” off the post-brain-zapping steroids (there to prevent brain swelling), but am down to a low enough dose that I can SLEEP well, thankfully.  That was a bit annoying.

The hard thing to deal with right now is that my hair is falling out (from the chemo) with increasing speed and enthusiasm, starting 10 days ago.  I made it home from our trip with hair but the amount on my head is looking less and less respectable!  Soon I will give up and make it all go away.  I have LOTS of nice hats so my head will be warm.  Maybe I will get a tattoo.

Speaking of tattoos:

I took it pretty easy Thursday and Friday, for me, and Saturday we had wonderful friends visiting overnight. I was tired & a bit loopy from the anti-seizure medication I’m on (standard prophylactic post-procedure stuff, along with steroids), but greatly enjoyed myself. This afternoon I took a walk and gradually edged myself into bed where I have been using my brain but resting my body ever since.

The people who are living with metastatic cancer are showing up for me–through personal connections with some of you, thank you!, and just by the power of the web (and those of you helpfully pointing me to where I need to look). It has been really good to be able to people the landscape in front of me with the existence of these folks, even if I don’t know them, even if I don’t ever call them in the end.

What next week offers: chemo tomorrow AM, a final postpartum visit with a recent client Tuesday, a follow-up appointment with the radiation oncologist Thursday, and PACKING! for the Grand Canyon emergency family adventure trip that starts Saturday AM (and brings us home Thursday the 30th).

So far I have only had the kind of cancer in which it’s the treatment that makes you feel so sick and unhealthy, not the cancer.  I guess this makes me lucky.

However, it is kind of a weird situation to grapple with mentally.  You are walking around harboring a deadly disease and you feel fine, you look fine, and you are not fine*.  Then chemo makes you tired, sick or sickish, prone to catching whatever’s going around, and possibly bald.  Plus a varied bouquet of other side effects depending on the chemo.  And so you feel sick for sure.  But it’s the medicine that’s doing it to you. Bizarre.

Here we are again.  I really never thought I’d bring this blog back to life but it is going to be the way I keep everyone up to date on my latest adventures with breast cancer.  And, if last time is any guide, it might be where I collect resources and information, share pictures, and post the odd thought on being in this odd position.

Having an invisible illness, especially one that doesn’t even have any symptoms at the moment, makes you an outsider in the regular world as well as an unfortunate insider in the world of the hospital or the world of oncologists.  It is a deeply odd feeling to be looking through cancer-drug trials on clinicaltrials.gov to see if I qualify for a particular trial or not; when I do, I think, Yay!, and then immediately think, why are you happy that you fit the profile of someone who would need to enter a drug trial for metastatic breast cancer?  (Well…consider the alternative.)

Sunday was a henna party. Here is my head (done by Arti and Meg):

Lately I keep facing this choice. Will today be a breast-cancer day or a regular day? Some days I don’t have appointments, feel all right, don’t do research or talk to other people in the cancer world, read novels, and get my “regular work” done. Other days I look things up online, let myself explore new Web sites that might hold useful information of one sort or another, read cancer-related books (see “bibliotherapy: sick”), talk to other people facing what I’m facing, make or go to appointments, and/or feel bad. And I am never quite sure which day I’m going to have, at least on a non-appointment day. Sometimes I get sucked in, sometimes I resist, other times I tell myself it’s useful and helpful to just go with the flow and follow my impulses as to what the spend my time on. I guess my goal is to prioritize the important breast-cancer stuff while not becoming a full-time obsessive breast-cancer junkie; and meanwhile, to get the “regular work” done on a reasonable schedule. All while not stressing out about either one.

Yesterday morning. My hair has been cut much shorter than usual (1/2" in front, at its longest) but you really can’t tell much difference! I’ll have to buzz it to 1/4" next week, so as to really look startling.

Good question. Given my reaction to blogging, nothing but something unusual and prejudice-shaking would bring me here. That something seems to be breast cancer, for the second time in my life, just before my 40th birthday. Though I have been sending out periodic e-mail updates to a large list of family and friends, there are some musings I haven’t wanted to deliver to peoples’ In boxes yet still thought some people would want to hear. Not sure yet what exactly I am up to, but capital letters are sure making me self-conscious.

So one thing I realized I’m feeling, overall, is that there are these two worlds–the world of the well and the world of the sick–and I slip from one to the other all the time. Maybe slip down into one from the other in a big way, too, with this scary diagnosis, and emerge later…next February?…back to the regular world again. Maybe the cycle is bigger–every 10 or 11 years?

Everything is chugging along in life and breast cancer is far behind me, making me an interesting and maybe more evolved person, but certainly not part of my personal day-to-day life, and then suddenly the ground opens up and I’m back in the hospital-doctor-surgery-Vicodin-recurrence percentages-chemotherapy drugs world with all the other scared sick people.

Here is where my reaction is kind of interesting. When I’m in the world of the sick, I feel relatively well and lucky, especially to have the partner I have and the family, friends, and community we both have holding us up. Not to mention having a curable disease, and being smart enough to learn what I want to learn to feel like a part of my own care. And finding good doctors who will talk to me and answer my (sometimes overly intellectual) questions, and perhaps even enjoy doing so. So it is somehow less complicated and less depressing to be in the world of the sick. Plus, priorities are pretty clear there.

Then I surface back into the world of the well where I am Greatly Impaired all of a sudden. Have I just had surgery and am on painkillers and have no energy? or am I just tired, distracted, worried, and wanting only to either Fix Things, Learn Some More, or read an escapist novel? Either way, I’m feeling Not Normal and being around normal people, living their life in the world of the well and not even being conscious of the world of the sick, really makes me feel pitiful. I feel like I don’t fit in at all anymore and have nothing to talk about–at least with people who don’t know what’s going on with me. And with the people who do know, sometimes I want to talk about it and sometimes I just want them to know, so we don’t have to talk about it.

This slipping back and forth is hard to handle. It’s also hard to explain why a trip to the oncologist is easier to deal with, for me, than an afternoon at the beach.