Update to "The New Normal: Living Under the Sword of Damocles"

Back in May, I wrote a post, "The New Normal: Living Under the Sword of Damocles", detailing medical issues that posed a potentially fatal danger for my wife Hilde. At that time, we were postponing surgery until further developments made the situation even more critical. (Failing sections of cervical reconstruction hardware from a 2001 surgery had shifted to where there was a large lump and a pinhole-sized tear on the back of her neck, creating a potential entry point for spinal cord or brain infection.)

That "further development" happened in June, when further shifting enlarged the tear and allowed actual metal to come out through Hilde's neck skin.

(I have photos I took to let Hilde see what was happening back there, but they're kind of alarming -- "Oh  shit, your wife is a Terminator! Run, Bruce, run!" -- so I won't post any. The full piece of hardware was several inches long and about the width and thickness of a popsicle stick, but only about 3mm of the tip projected outside her skin. That was plenty alarming, though, he understated.)

So... more x-rays, tests, consultations with her doctors at Mayo, etc. While those were going on, we kept the wound slathered with antibiotic ointment and covered with a dressing; super-stretchy surgical tubing, worn like a headband, kept the gauze pad in location on the awkward spot.

We also used the weeks while a surgical plan was developed to try to prepare for the worst possible outcomes. We had our wills updated, set up a living trust for our property and possessions, and had Durable Power of Attorney and Advanced Medical Directives drawn up so decisions could be made and documents signed in the event of our incapacitation. (This was all stuff we should have gotten done much sooner, but I guess it took a medical crisis to build our motivation to critical mass. Don't wait 'til the last moment yourself, folks!)

The Plan B for surgery that eventually developed was less drastic than originally envisioned. The original plan intended to remove most or all the failing hardware, but this would also leave Hilde's neck and spinal column in a precarious condition, likely to eventually fail and result in quadriplegia and/or death.

Plan B was to leave most of the hardware "Abandoned In Place". The actual projecting piece of metal (and its matching piece on the right side of Hilde's neck, which was close to coming through the skin there) would be trimmed back as far as was safe, a plastic surgeon would take a thin flap from the trapezius muscle and place it over the surgical area (this increases blood flow and promotes healing; it was expected that Hilde's normal wound recovery ability would be compromised by years of steroid medications), and the wound closed.

Plan B would mean a shorter time in surgery, less trauma to her body, and *some* reduction in risks and complications. Less chance of the neck destabilizing post-surgery, for one. But the neurosurgeon's primary concern was over the stenosis in Hilde's cervical spine (the "dog-leg turn" I mentioned in the May post) that was already putting pressure on her spinal cord in several places; her fear was that anesthesia might cause Hilde's blood pressure to crash, reducing blood flow to the already restricted parts of the spinal cord and starving it of oxygen, which might still result in quadriplegia or death. So... less risky, but still a high-risk surgery.

The Plan B surgery took place, yesterday, August 28th. Let's skip any more suspense: the surgery was successful; Hilde came out of it awake and aware and without losing the rest of mobility and movement she has left after fifty years of rheumatoid arthritis.

Not without a few moments of drama, though. When Hilde was turned over for the surgery, the crash in blood pressure the neurosurgeon had feared began to occur. But they were able to reposition her and get the BP back up to acceptable levels before any permanent damage occurred, and the rest of the operation went smoothly. The trapezius-flap procedure was left undone; Hilde's skin and muscle tone looked better than expected and skipping the procedure shortened the time in surgery and reduced the possibility of further blood pressure problems.

So... it looks like we'll end up with a reset to the end of last year, before the skin tear developed. This is, to put it very lightly, a relief. But the months of anxiety and dread (at least on my part; Hilde was stoic, I was terrified) came with a few lessons:

Most importantly, get your affairs and papers in order now. Even though this was a slowly building crisis, one that gave us months to try and prepare for the worst, there's always things you'll forget or not get done. Spending part of last weekend drawing up a list of people to notify if Hilde died in surgery was not a fun activity, but one that had to be done. If this had developed as a sudden emergency, we'd have been much more unprepared.

I'd probably have been more efficient at preparing for the worst if I hadn't resisted taking anti-anxiety medication. There were so many times I felt close to panic; it's hard to focus when your mind keeps going "What if...? What if...? What if...?" and it feels like a pile of rocks is sitting on your chest.

Thanks to everyone who gave us their best wishes and hopes during this time.

The New Normal: Living Under the Sword of Damocles

Over on Twitter during the last several months, I've made several vague allusions to "medical issues" Hilde and I have been dealing with. Those issues have reached a point of (current) stability that I finally feel able to write about.

Hilde's had severe Rheumatoid Arthritis for fifty years, since she was 22. The RA has worn at and worn down her body and ability to use it ever since, and has made her become progressively more and more disabled and dependent.

Back in 2001, the RA looked like it might literally kill her. Her C-1 vertebrae, at the top of the spine, had degraded to the point it was beginning to break apart, allowing her skull and brain to begin moving downwards. In the neurosurgeon's memorable phrase, her brain would be "pithed like a laboratory frog". Without reconstructive surgery, he estimated her life expectancy as two weeks to six months (but most of that six months would be as a brain-damaged quadriplegic). The surgery itself was not without risk, with a 1-in-7 chance of dying on the operating table.

That surgery was done, Hilde survived, and for seventeen years her neck has been held together with wires and rods and screws. Her neurosurgeon has said most people who have that type of operation gain another 2-5 years of life, so she's beaten those odds several times over. (When we've seen the neurosurgeon every few years for follow-ups, we get the impression he'd like to put Hilde in a big glass box and take her to medical conferences to show off to other doctors.)

BUT... when hardware's been in a body that long, things happen. It degrades. It shifts. It breaks.

About 7-8 years ago, Hilde began to get a couple of small lumps on the back of her neck. X-rays revealed some of the surgical screws were slowly working their way loose and trying to back out of their holes. We were advised that it was something to keep an eye on, but not anything critical or dangerous at that point. We had another follow-up in 2015, when the lumps had gotten slightly larger. At that appointment, we were told that a second reconstructive surgery would be much more dangerous, with only 50/50 odds of surviving the operation. We were advised that unless the shifting hardware got to the point where it punctured the skin and provided a potential entry point for spinal cord or brain infections, surgery probably shouldn't be considered an option.

That point was reached in late January of this year; one of the lumps on Hilde's neck had increased in size dramatically over the previous month or so, stretching the skin to the point that a small tear, about pinhead size, opened up.

So, since then, we've been doing our best to keep that opening clean and free of infection, treating it daily with antibiotic ointment, while we've been consulting the neurosurgery department at the Phoenix branch of the Mayo Clinic. (Hilde wants any future surgeries done at Mayo because the quality of care is much higher than other hospitals -- like, a lot -- she's been in over the years.)

The findings from x-rays, cat scans, MRIs, bone density scans, etcetera, have been... not good.

Essentially, by this point, all the hardware in Hilde's neck has failed, coming loose or broken, and what's probably continuing to hold Hilde's neck together is the scar tissue from the 2001 surgery. To go in to remove the failed hardware would entail cutting through that scar tissue, probably resulting in further destabilization of the neck and spine, leading to further complications ranging from chronic neck pain to quadriplegia to death.

Further, Hilde's bone density (after fifty years of RA and steroid meds) is officially osteoporotic, and the Mayo surgeon feels attempting to install fresh hardware would either fail quickly or possibly be unable to do at all.

Plus... the MRI showed that Hilde's upper spine, rather than being a smooth curve, has a slight dog-leg bend (something like the dog-leg chisel shown at this link) that's already putting compression on her spinal cord in two places. Dealing with that would be a further complication and increased risk for surgery.

So... the recommendation has been to not attempt surgery at this point, but to continue treating the skin break on Hilde's neck and avoid infection. Which is what we're doing.

But at some point, Something Will Happen. A germ might get lucky and start an infection despite our efforts. More of Hilde's internal hardware will move and shift and create a critical situation. That compression on Hilde's spinal cord might increase and create its own crisis. At that point, assuming Hilde survives whatever critical failure occurs, postponing surgery may not be an option. And, if she survives that surgery, it's very uncertain what quality or how long a life she might have afterwards.

So that's our New Normal.

(Added: This has been the Biggest Bad in our lives since January. Hilde's also had a slew of other, unrelated issues since November, including two hospital stays, hearing problems, and losing the remaining functionality in her left arm, which last has left her unable to hold or read printed books anymore. She also can't use touchscreens or a mouse to use an ereader, so she's currently feeding her book jones with audiobooks that I or Tabbi start or stop for her. There's a new control-with-head-movements program that looks like it might make it feasible for her to use a tablet, but it's been difficult and frustrating for her to try and learn.)

2017 reading

I've been keeping lists of books I've read (or listened to on audiobook) for a few years. Here's gthe list from 2017, both by month read and by author. Some comments/mini-reviews for ones I particularly liked are after the lists.

JANUARY
In the Garden of Iden, Kage Baker
Three Bags Full, Leonie Swann (murder mystery from the PoV of a herd of sheep; surprisingly, it works)
Bellwether, Connie Willis
In Sunlight or In Shadow, Lawrence Block (ed.)
Monstress, Marjorie Liu (graphic novel)
Pirate Utopia, Bruce Sterling
Slayground (a "Parker" novel), Richard Stark (ps. Donald Westlake)
Impersonations, Walter Jon Williams

FEBRUARY
Martians Abroad, Carrie Vaughn
Plunder Squad (a "Parker" novel), Richard Stark (ps. Donald Westlake)
Dreadnought, April Daniels
The Unbeatable Squirrel Girl: I Kissed A Squirrel and I Liked It, Ryan North & Erica Henderson (and others)
The Unbeatable Squirrel Girl Beats Up The Marvel Universe, Ryan North & Erica Henderson
Valentine Pontifex, Robert Silverberg
Butcher's Moon (a "Parker" novel), Richard Stark (ps. Donald Westlake)
Crooked Heart, Lissa Evans
The Hipster From Outer Space, Luke Kondor

MARCH
Faceoff, ed. David Baldacci (teamup stories between popular thriller characters)
Caliban's War (The Expanse #2), James S.A. Corey
We Are All Completely Beside Ourselves, Karen Joy Fowler
I Shudder At Your Touch, ed. Ellen Datlow (abridged audiobook)

APRIL
Abaddon's Gate (The Expanse #3), James S.A. Corey
Get In Trouble, Kelly Link
Code Name Verity, Elizabeth Wein
Lovecraft Country, Matt Ruff
A Knight of the Seven Kingdoms, George RR Martin

MAY
Jamrach's Menagerie, Carol Birch
The Unbeatable Squirrel Girl 5: Like I'm the Only Squirrel In the World, Ryan North & Erica Henderson (and others)
Colonel Roosevelt, Edmund Morris
Angst, David J. Pedersen
A Hundred Thousand Possible Worlds, Bob Proehl
The Holver Alley Crew, Marshall Ryan Maresca

JUNE
The Plague Dogs, Richard Adams
The Service of the Dead, Candace Robb
The Outsider, Fredrick Forsyth
Tropic of Serpents, Marie Brennan

JULY
A Closed and Common Orbit, Becky Chambers
Whispers Underground, Ben Aaronovich
Forever and A Death, Donald Westlake
All Systems Red, Martha Wells
The Drop, Dennis Lehane
Indigo, Charlaine Harris, et al.

AUGUST
Comeback (a "Parker" novel), Richard Stark (aka Donald Westlake)
Arsenic With Austen, Katherine Bolger Hyde
Gwendy's Button Box, Stephen King & Richard Chizmar
Six Wakes, Mur Lafferty
Sovereign, April Daniels
Northhanger Abbey, Jane Austen
Backflash, (a "Parker" novel), Richard Stark (aka Donald Westlake)

SEPTEMBER
Tremontaine, Ellen Kushner, et al.
Duma Key, Stephen King

OCTOBER
The Strange Case of the Alchemist's Daughter, Theodora Goss
Flashfire (a "Parker" novel), Richard Stark (aka Donald Westlake)
Firebreak (a "Parker" novel), Richard Stark (aka Donald Westlake)
The Bad Beginning (A Series of Unfortunate Events, Vol 1), Lemony Snicket
Strange Beasties, ed. Juliana Rew

NOVEMBER
Meddling Kids, Edgar Cantero
Buffalo Soldier, Maurice Broaddus
The Reapers Are The Angels, Alden Bell
The Broken Sword, Poul Anderson

DECEMBER
Nightmare At 20,000 Feet: Horror Stories of Richard Matheson, Richard Matheson
Ancillary Mercy, Ann Leckie
The Wall of Storms, Ken Liu
The Book of Swords, ed. Gardner Dozois
The Adventure of the Incognita Countess, Cynthia Ward
The Bookseller, Cynthia Swanson
Final Girls, Mira Grant

- - - - -

SORTED BY AUTHOR:

• Whispers Underground, Ben Aaronovich
• The Plague Dogs, Richard Adams
• The Broken Sword, Poul Anderson
• Northhanger Abbey, Jane Austen
• In the Garden of Iden, Kage Baker
• Faceoff, ed. David Baldacci (teamup stories between popular thriller characters)
• The Reapers Are The Angels, Alden Bell
• Jamrach's Menagerie, Carol Birch
• In Sunlight or In Shadow, Lawrence Block (ed.)
• Tropic of Serpents, Marie Brennan
• Buffalo Soldier, Maurice Broaddus
• Meddling Kids, Edgar Cantero
• A Closed and Common Orbit, Becky Chambers
• Caliban's War (The Expanse #2), James S.A. Corey
• Abaddon's Gate (The Expanse #3), James S.A. Corey
• Dreadnought, April Daniels
• Sovereign, April Daniels
• I Shudder At Your Touch, ed. Ellen Datlow (abridged audiobook)
• The Book of Swords, ed. Gardner Dozois
• Crooked Heart, Lissa Evans
• The Outsider, Fredrick Forsyth
• We Are All Completely Beside Ourselves, Karen Joy Fowler
• The Strange Case of the Alchemist's Daughter, Theodora Goss
• Final Girls, Mira Grant
• Indigo, Charlaine Harris, et al.
• Arsenic With Austen, Katherine Bolger Hyde
• Duma Key, Stephen King
• Gwendy's Button Box, Stephen King & Richard Chizmar
• The Hipster From Outer Space, Luke Kondor
• Tremontaine, Ellen Kushner, et al.
• Six Wakes, Mur Lafferty
• Ancillary Mercy, Ann Leckie
• The Drop, Dennis Lehane
• Get In Trouble, Kelly Link
• The Wall of Storms, Ken Liu
• Monstress, Marjorie Liu (graphic novel)
• The Holver Alley Crew, Marshall Ryan Maresca
• A Knight of the Seven Kingdoms, George RR Martin
• Nightmare At 20,000 Feet: Horror Stories of Richard Matheson, Richard Matheson
• Colonel Roosevelt, Edmund Morris
• The Unbeatable Squirrel Girl: I Kissed A Squirrel and I Liked It, Ryan North & Erica Henderson (and others)
• The Unbeatable Squirrel Girl Beats Up The Marvel Universe, Ryan North & Erica Henderson
• The Unbeatable Squirrel Girl 5: Like I'm the Only Squirrel In the World, Ryan North & Erica Henderson (and others)
• Angst, David J. Pedersen
• A Hundred Thousand Possible Worlds, Bob Proehl
• Strange Beasties, ed. Juliana Rew
• The Service of the Dead, Candace Robb
• Lovecraft Country, Matt Ruff
• Valentine Pontifex, Robert Silverberg
• The Bad Beginning (A Series of Unfortunate Events, Vol 1), Lemony Snicket
• Slayground (a "Parker" novel), Richard Stark (ps. Donald Westlake)
• Plunder Squad (a "Parker" novel), Richard Stark (ps. Donald Westlake)
• Butcher's Moon (a "Parker" novel), Richard Stark (ps. Donald Westlake)
• Comeback (a "Parker" novel), Richard Stark (aka Donald Westlake)
• Backflash, (a "Parker" novel), Richard Stark (aka Donald Westlake)
• Flashfire (a "Parker" novel), Richard Stark (aka Donald Westlake)
• Firebreak (a "Parker" novel), Richard Stark (aka Donald Westlake)
• Pirate Utopia, Bruce Sterling
• Three Bags Full, Leonie Swann (murder mystery from the PoV of a herd of sheep; surprisnigly, it works)
• The Bookseller, Cynthia Swanson
• Martians Abroad, Carrie Vaughn
• The Adventure of the Incognita Countess, Cynthia Ward
• Code Name Verity, Elizabeth Wein
• All Systems Red, Martha Wells
• Forever and A Death, Donald Westlake
• Impersonations, Walter Jon Williams
• Bellwether, Connie Willis

- - - - -

SOME OF MY FAVORITES OF THE YEAR'S READING:

• The Broken Sword, Poul Anderson -- I first read this about fifty years ago, listened to the audiobook (narrated, very nicely, by Bronson Pinchot) recently. I had forgotten how well Anderson could evoke the rhythm, style and atmosphere of classic Norse saga.
• The Reapers Are The Angels, Alden Bell -- You might think "Another furshlugginer zombie novel," but this is a particularly well-done example of the genre. YA protagonist, the story deals with the idea that to survive in a world largely devastated by monsters, people might themselves have to become monsters. And, when enclaves of normalcy begin to slowly reestablish, what place will there be for the monsters in human skin?
• A Closed and Common Orbit, Becky Chambers -- I read Chambers' first book, The Long Way To A Small Angry Planet, but was not as bowled over by it as a lot of people; enjoyed that first book, but considered it "good" rather than great. I found this sequel kept my attention and interest to a much greater degree. An artificial intelligence meant to run a spaceship is implanted in a (highly illegal) human body; the story deals with her slow and sometimes rocky adjustment -- and how much it's possible for her to adjust -- to life in a new body and environment. The tighter focus on a smaller cast -- two main characters here, as opposed to the ensemble cast of The Long Way -- works to great advantage here, I thought.
• The Outsider, Fredrick Forsyth -- I'm not sure I've ever read any of Forsyth's fiction beyond a collection of short stories. Nope, not even Day of the Jackal. But The Outsider, Forsyth's memoir of his life and surprising adventures, got such an enthusiastic reception I gave it a try. Good decision. Turns out Forsyth used some of his own experiences and wide-faring travels as springboards for many of his novels. Combined with the authorial voice of a great raconteur, the pages just keep turning on this one. I especially liked how Forsyth tied the ending, set in his 70's, back to his experience as a young boy.
• We Are All Completely Beside Ourselves, Karen Joy Fowler -- This novel has a major revelation, a Big Surprise Twist that by the time I read the book was one I was already aware of. But that wasn't a spoiler for me, because that was only the plot element around which the story's themes revolved. Themes of perception, of how the stories we write in our heads are not always the true stories, of how what we want to be real is not always reality. The narrative reversals in the later parts of WAACBS left me going "Whoa-a-a...." Very impressive story, very impressive writing.
• The Strange Case of the Alchemist's Daughter, Theodora Goss -- I like a lot of books that revisit old classics and put a new twist on them. Sometimes by writing a "Next Generation" sequel dealing with the children of the original work's  characters. Sometimes by doing a "mashup", putting characters from several classic works by several authors together in a new story. Theodora Goss does both in Alchemist's Daughter, with the daughters of Jekyll and Hyde, the Bride of Frankenstein, Rappaccini's Daughter, and panther-woman Catherine Moreau coming together for mutual support and to investigate and fight a common enemy. (Sherlock Holmes and company also play important parts in the story.) I especially liked the interactions between straight-laced Mary Jekyll and street-tough Diana Hyde; I was reminded of the odd-couple cop-pairings of Lethal Weapon and other movies. (I'd love to see the BBC make this as a movie or mini-series.)
• Tremontaine, Ellen Kushner, et al. Set in the swords-and-manners world of Kushner's novel Swordspoint (though several decades earlier), this is one of the collaborative novels being published by Serial Box. (Multiple authors contributing sections of a novel--length story arc; very similar to the "braided novels" in the Wild Cards series.) Politics, romance, diplomacy, trade issues and, yep, swordfights mix in the telling. On occasion, stylistic differences between contributors are a bit jarring, but overall this was an engrossing tale, and I'm hoping to see more Tremontaine books.
• Six Wakes, Mur Lafferty -- Murder mystery in space. The characters are travelers on a slower-than-light interstellar ship who only intermittently awake from suspended animation during the decades-long voyage. A side-effect of suspension is memory loss, but brain recordings can be reloaded on awakening. Problem: The woken find one of the crew very messily dead, and their memory downloads are from the earliest days of the voyage, with later recordings deleted. What happened during those missing years, and does the killer even know they're a murderer?
• Ancillary Mercy, Ann Leckie -- Concluding volume of the "Imperial Radch" trilogy. Grand space opera. Breq, formerly part of the multi-bodied group mind that controlled and manned an Imperial warship, has been reduced to a single soldier who has to learn to survive as an isolated individual in a milieu of complicated politics and societies. The trilogy won numerous awards, and rightly so.
• Lovecraft Country, Matt Ruff -- When it comes to Lovecraftian fiction, I can usually leave it or leave it. I read enough of HPL and his imitators when I was younger to know very little of it appealed to me. But Ruff's homage/rebuttal of Lovecraftian traditions was an exception. Lovecraft's casual/neurotic racism is countered by making the main characters black in 1950's America and having to deal with actual racism, segregation and human-sourced danger along with the supernatural elements. They also feel like very real characters; I particularly liked Letitia; if LC were a movie (it's being developed as a TV series), Letitia would be the action-hero character.
• Butcher's Moon (a "Parker" novel), Richard Stark (ps. Donald Westlake) -- I've been a fan of the Parker novels (gritty crime stories about a career criminal and heist artist whose "professionalism" may be sourced in sociopathy)  for a long time, and have been catching up on volumes I hadn't read back in the day. For a long time, 1974's Butcher's Moon was the last Parker adventure (Westlake revived the character in 1997 for eight additional books before his death in 2008) and could be considered the grand finale of the series. Much longer than earlier volumes, the story hearkens back to plot elements of earlier books and eventually draws in numerous secondary characters from those books for a grand Magnificent Seven/Ocean's Eleven type of resolution. Great work by Westlake, balancing numerous plot elements and complications as well as a a large cast.
• The Adventure of the Incognita Countess, Cynthia Ward -- like the Theodora Goss book mentioned above, this is a mashup of characters and ideas from a number of classic works. In 1912, Lucy Harker, half-vampire daughter of Mina Harker and Dracula, is a new government agent tasked with hunting and killing full-blooded vampires and "dhampirs". The British Empire is also in the midst of reverse-engineering and adapting the captured technology of the failed Martian invasion of some years previous. The adaptations include the powerful engines on the newly built, just launched Titanic (uh-oh), where Lucy encounters Carmilla, the pre-Dracula vampire from Le Fanu's novel of the same name. Complication: There is intense and mutual attraction between sexually-repressed Lucy and sensuous Carmilla. It all works itself out in a breakneck pulp-style romp that's a lot of fun. (And, once again  Sherlock Holmes is present in a major supporting role. I'm starting to think his middle name may be "Ubiquitous". This phenomenon has been especially notable since much of the Holmes canon was finally declared part of the public domain awhile back, with a virtual tidal wave of new Holmes mysteries in the classic style -- some well-done, some *koff* not -- from both traditional and indie publishers, or using Holmes as a secondary character as Goss and Ward have done. But at least Holmes homageurs no longer have to file off the serial numbers and give their look-and-feel imitations ridiculous names like, oh, Solar.)