Endless Knots

The problem with moving too quickly - Engage with Grace 2

Bloggers will understand. In my haste to throw up the previous post before doing something else that was no doubt vitally important, I failed to look at the slide I included, which was for fun during last year's Engage with Grace campaign. The real slide, with the right questions for your family to discuss relative to end-of-life issues is this one. Sorry (and I'm slowing down, she says, while typing like a maniac).

Remember Engage with Grace?

Very important story on end-of-life decisions or, more importantly, discussions that we all need to have. Piece on NPR site and authored by "AP" (whoever wrote it deserves a decent byline), "Americans are treated, and overtreated to death," features the story of Rosaria Vandenberg, who died from a brain tumor in 2004, with very little time at home and, in retrospect, her family thinks, too much intervention.

The result: her sister-in-law Alexandra Drane started Engage with Grace: The One Slide Project, which I've participated in on Thanksgiving for the past few years during its annual blog rally. Will be even more poignant for us this year.

Here are the five questions for your family to talk about:

 

The language of leaving: Passages in Caregiving

A few days after posting about our current predicament, my friend Emily called with urgent news: she'd just heard Gail Sheehy on NPR and I had to read her new book. I picked up Passages in Caregiving a few weeks later. In it, Sheehy, author of the spectacularly successful Passages: Predictable Crises of Adult Life and many other books, speaks of "eight turnings" in caregiving. That post of mine, titled "A turning for J&J," was written in what Sheehy identifies as the first, Shock and Mobilization. (We're now in The New Normal, according to Sheehy, a fair description of how it feels, a phrase that our friend Carole used after the initial crisis period ended.) I'd used the phrase without benefit of having read her book.

I'm struck with many of the words Sheehy's uses, which so perfectly capture this strange land: shock and mobilization, the new normal, the in-between stage, the long goodbye. We've used them all, others have used those same terms with us, all seemingly spontaneously.

There is no lingua franca for this kind of experience. As our friend Tom (Emily's hubby) said, "We don't know how to do this. We're not trained." Yet when you're in it, the descriptive terms fall out of our mouths without our having googled "terms for stages of terminal illness." Yes, Elisabeth Kubler-Ross identified five stages of grief, which are both similar and different. Much as I respect her work and have found it useful, those stages don't really apply to where we are with this.

Sheehy's book is filled with stories, including her own, the 17-year saga of her husband, Clay Felker's, cancer. She was the caregiver; they suffered mightily, including financially to support him; and she's drawn brilliant conclusions, including the one that stands out for me: establish your network and you'll be OK. In our experience, our "friendhood" has meant everything to us.

Buy multiple copies of her book and give them to everyone who's going through what Jeff and I are.

A turning for J&J

It's been thirteen days since I last posted, an unheard of interlude here. The reason is something we never imagined.

On el Cinquo de Mayo, Jeff Stamps, my husband of 38 years, father of my children, business partner, and my co-author of six books and many articles, went to the doctor. He'd not been feeling well for several months but, being quite physically fit (he was a competitive downhill skier from the age of eleven, has always jogged, done tai chi, and more recently practiced yoga), he attributed his malaise to stress and overwork. The wife was not so sure but finally, nearly two weeks ago on a gorgeous Wednesday, he consented to visit his primary care physician.

Within harried hours came the diagnosis: Stage 4 pancreatic cancer.

By that evening, Jeff was admitted to the hospital for a simple procedure to relieve a blocked bile duct, which had caused severe jaundice. Meanwhile our children and grandchildren had arrived home and we found ourselves on a twisted path that was beyond our reckoning. In just this short time, there have been many turns already, most of them lined with gifts of friendship and love that lay hidden in the normal schedule of life.

We don't know how many difficulties face Jeff (and our family) going forward but we know they are considerable and we're clear about the conclusion and the vague time frame, which is mercilessly short.

And I don't know how much I'll be writing about this. My natural inclination is to use writing to stay sane and clear, which is what I've done for my whole life (ok, since I was six and I wrote my first published article about a birthday party in my first-grade class). But this is different, as I'm sure you can appreciate. And I'm finding that I can't keep up with the many beautiful notes we've gotten. So if you're prompted to write, please know that while I may not be able to respond, we are very grateful.

We are learning things we never knew about Jeff -- or perhaps better stated, things we knew but which didn't have the proper venue for expression. Like his huge capacity for grace when staring down his own death, his ability to let go of the things he holds most dear, and his untiring appetite for tackling complex ideas, which he continues to do even as he faces treatment to reduce symptoms. I would wish this kind of acceptance on anyone given the kind of death sentence he has. And I would hope that all families could find the way to do what our children have done, which is to join us, and find ways to continue their important work even as their father is dying.

We now are a three-generation household with our darling grandsons providing the new background music. Watching them laughing their little heads off (they're eight months now) softens the jagged edges of this journey.

More, I'm sure, as this unfolds.

When there's no potable water in a hospital

Given the water main burst west of Boston, I was glad to read that Boston's Longwood medical area, which has four giant hospitals, was instantly supplied with potable water diverted from elsewhere.

Not long ago, well...just read this.

Health care broken? Not here

Photos from Newton-Wellesley Hospital website

I don't know who came up with the brilliant idea but, after my first experience with urgent care last week, I'm awarding them an Endless Knot*. Terrific concept and in this case well executed.

The situation: suspected norovirus strikes family-wide, felling four adults in less than 24 hours. Unknown cause but current suspect is Colonel Mustard in the library with the cupcake, i.e. it's possible someone with the virus had touched something in the food area where three of us indulged in small sweets. But it also could have been the friend who stopped by or the business advisor with whom we met that day or the box of arugula...you get the point. No way to know.

Regardless, it was so bad for one of us that we called the doctor's office, where we were advised to go to "urgent care." I'd never heard of such a thing.

"You mean the ER?"

No, not the ER at all, which, as we all know, only really functions in emergency mode for real emergencies and, in situations like ours, unpleasant and miserable for the sufferers but unlikely to be truly life-threatening, would have meant a rather prolonged agony.

Off to the closest urgent care, in this case, Newton-Wellesley Hospital Urgent Care, located neither in Newton nor Wellesley nor at the hospital but about five minutes from my house in Waltham, Mass. Now how to describe the building? Imagine an old, say, shoe factory that's now occupied by a bunch of different shoe stores--one for kids, one for adults, one for people needing prosthetic shoes. My passenger kept saying, "This can't be it," as we followed the directions and drove up to the old Waltham Hospital, since the biggest sign said "Children's Hospital." Another sign, a bit further along the building facade, said "Beth Israel Deaconess Cancer Center." Then, in smaller letters, between these two parts of the building, I noticed some lettering that said "Newton-Wellesley Urgent Care." Dropped passenger off, parked car...

Although I thought all I was doing was providing transport, I quickly realized that things were deteriorating, point being that two of us checked in, were immediately treated (IV fluids, medications), very kind staff, and four hours later we were on our way back home, all systems stable, fevers in the tolerable range and such.

Astonished at the efficiency, I asked the attending physician, Dr. Barry Ehrlich, about how this place had come to be (it opened the day after Waltham Hospital was shuttered in 2003), remarking on how excellent the service was. I have to hand it to Dr. Ehrlich for honesty. He said that we were really lucky, that often the wait is an hour or more, and that we'd hit it just right. I'm glad and if the place is typically understaffed, then I'll have to take back half an Endless Knot.

Regardless, urgent care centers are a great idea...and helped put our family back on the road to health, uh, urgently.

*Endless Knot--new feature on the blog whereby things that are really great and deserving of awards get one.

MS interview on The Exchange now up!

Take a listen to Ben Kieffer's interview with three of us authors whose essays appear in Voices of Multiple Sclerosis on The Exchange, a program on Iowa Public Radio.

NB: This is the first time I've ever spoken publicly about MS. Please let me know what you think. There's a lot to learn from this show, including Dr. Terry Wahls's scientific research that supports what seems evident to anyone with serious illness: eat right (lots of dark green veggies) and exercise. Her research and findings are, of course, more complex but if you're ill today and looking to get better, start at least with these two sine qua nons.

Medicare explained: Your monthly premium will be $0

Want to drive yourself completely mad? Help someone subscribe to the confusing insurance that supplements Medicare.

I don't mean supplements unless we're talking about Medicare Supplements which is different from Medicare Advantage plans, which may or may not be the official name of them, no, sorry, it is the name of some of them, which probably are Medigap plans that address the Medicare doughnut, which is not something you eat because if you're paying for it you don't have any money to buy food unless you never go to the doctor which you most likely would not be able to do because any doctor you've ever gone to or possibly heard of doesn't take whatever plan you're on, which is OK because you wouldn't be going for your annual physical anyway since Medicare doesn't pay for that, a nod, I would venture, to its illogic that prevention is not that profitable so why bother with that so having learned all of this through approximately three weeks on the phone during which time you contracted, suffered from, and recovered from at least the seasonal flu and perhaps swine, which you can't be vaccinated against due to the fact that you're not in a high risk group even though you got it, you call everyone else you know who had to sign up for insurance that lives in the neighborhood of Medicare whereupon you learn that, to a person, they impulsively signed up for something rather than jump out the window which would be unfortunate since your daily co-pays are so high that you'll lose your house if you even drive near the hospital, at which point you call your relative's primary care provider's office for the thirty-fourth time to discover that the doctor whom the insurance company just told you was covered by the plan is not covered by that plan ("it's a mistake on their site and we can't get them to fix it"), whereupon you scream ohmygodcanyoupleasejusttellmewhattosignhimupfor and the primary care's insurance expert, having run into this a time or two before, pulls the standard answer out of the pile, which is that there is only one plan that the office has a contract with and even though you've never heard of the plan and are slightly suspicious because when you look it up on their site you see that the monthly premium is $0 and think naturally it must be a total typo, leading to seven more hours on the phone wherein you make the insurance company representative swear in court that the premium is $0 (don't ask, Medicare just pays them a lump sum so they don't need to charge you, the consumer), which seems completely like a total lie and certainly has been designed to catch you out on your first claim, well, you're so exhausted by this point, not to mention your poor relative who's very good at abstract systems thinking and, shall we say, less inclined to tolerate this kind of thing, but who because he unlike you can read manuals actually reads the whole 3000-page document the government sends out, which means he knows a gap from a doughnut and you just say, ok, sign him up and if you never hear from me again it's because I have, as you can see, gone completely bonkers.

It's not covered.

Are you up yet?

Three weeks plus six days ago, Lake and Finn were born, eight weeks premature.

Many people have written asking how they're doing and, as I generally don't write specifically about family matters on the blog, I haven't been inclined to post about them. However, I can always make an exception or two when a picture says everything.

But first: both boys are perfectly fine. Absolutely no medical problems, for those of you who have worried on our behalf. Nothing wrong except they're little and very young. Both are home; Lake has been for over a week; Finny came home last Friday. And now life really begins. Our friend, Priscilla Harmel, a fabulous photographer, has taken many pictures of them already, including the second one.

 

No matter how far apart they are when they're put down,
they seem to gravitate toward each other

And intertwine

Lake was really happy when Finny came home

We were too.

Sort of a scene: How the person who introduced me to "my person" and I...

When I began drafting my hospital scenes, I didn't know how to refer to my reason for writing them. I wanted to protect my daughter's privacy but realized that my posts would have little credibility unless I could put a face to them. No one hangs out in hospitals without cause.

But how to refer to her? Grey's Anatomy to the rescue, a hospital show, no less, providing the proper referent. I remembered the scene where (oh, do I hope I've got this right) Cristina says to Meredith, "You're my person." And thus "my daughter" became "my person" for the sake of this writing.

So that's the foundation for this note, about how someone else can be one's "person." I always think of that phrase when the show is on.

Next layer: my hard drive crashes in the midst of my person's ordeal, causing me to spend a lot of time on the A. New Yorkers will understand this next sentence. If a train could be my person, it would be the A - with the B, which sadly is shutting down for a couple of years, a close contender (but all of that is for another post). The A has this beguiling trait: it races from 59th Street at Columbus Circle to 125th Street without a stop. In subway life, this is at least an eon's worth of time saved - and because the hospital that my person endured was just a few stops beyond 125th, I clocked many a ride on the A, racing downtown for various things, including numerous journeys taking my broken machine to a surgeon near Columbus Circle.

Much as I love the A, I hated this particular trip that I am about to describe. I was often tired during my person's ordeal. No, I was always tired during those many weeks and, when unforeseen obstacles got thrown in my path, I became a very unhappy person. Grouchy. Irritable. Ungiven to smiling at strangers. 

On this particular Sunday (third layer), I was very very tired and really really annoyed. I was desperately seeking my files, which, as noted below, were supposed to be on my backup drive but which were in fact...missing! I was carrying about fifteen pounds of technology, when adding in all the cables and power cords and my phone and its charger and my camera and its battery. And it was hot. And I only had a little time. And all I could think about were the twelve blocks ahead of me once I got off the train, the long slog to the Mac technician's shop, which, in fact, was in his bedroom, or his bedroom was in his shop, or it was his photography studio because, being a Mac tech, he was, obviously and actually, a photographer, and clearly headed for Paris in a few days, not to mention the gym, toward which I was preventing his departure because I was a little late and...

The A was pulling into Columbus Circle. I slung my backpack over my shoulders in a less than graceful swoop. One strap caught in my pendant, the other tangled around my purse, my shirt got caught behind my back, falling off my shoulder altogether, the train jerked to a halt and I stumbled off the A onto the platform directly into the path of a "person" waiting to get on the train.

Have you figured it out yet? Cristina Yang! Yes, Sandra Oh! And until tonight, when I caught up with the season opener, I hadn't put person-to-person together. Cristina (and your writers), that bedraggled woman with the forlorn look on that Sunday several weeks ago, owes you (all) one big THANK YOU for providing cover for "my person."