Sunday, March 10, 2019

Sustainability

It's funny how sometimes things just work out. This morning I stepped on the scale and -- eyeing the 160 pounds on the dial -- was transported back to just six months ago, when it would have read 200+ and felt immovable. It had taken me years of steady eating and relatively little physical exertion (kind of my natural state), to reach that pinnacle. And now -- following my self-imposed, though involuntary, starvation diet -- I find myself at a place where I am "fixed" (see the fascinating video below if you want to know what they did to me and have the stomach {pun intended} for such things):




I now have a choice: I can either try to put my body in better, though probably still asymmetrical shape (once my small incisions heal) or succumb to my baser snacking urges and put the weight back on. While I've been able to eat pretty normally over the past week (though only liquids and "soft" foods), my stomach has not expanded enough to truly make me hungry.  I'm hoping I can maintain that general attitude about food, seeing as for awhile after the stroke, I think I rationalized comfort food as something I deserved (And when you feel you deserve something, you "De Serve" yourself). Even after getting the ok from my doctor to eat an unrestricted diet, pushing the boundaries of excess amounted to eating a second piece of pizza on Friday movie night (Joe Versus the Volcano)

Like the titular Joe, I've often felt like I had a "brain cloud". Obviously, it's romanticized and a fairy tale to believe that hyper awareness of one's mortality is enough to make life so easily lived bigly. But I have said (to myself and others) that my semicolon has given me more than its taken away. That is certainly not true for everyone experiencing it vicariously, but it has at the very least given me a meaningful and authoritative voice on a subject no one else can claim expertise -- my own experience. It's downright empowering to be that confident in one's knowledge and capabilities.

How can I call that anything other than a gift?

Wednesday, February 27, 2019

Home Is Where...

I thought maybe the best way to describe my two days in the hospital would be to counterpoint the differences between there and home. So...

The hospital is where:


  • they cut you open.
  • they stitch you up.
  • you are labeled, Strict NPO! (nothing through the mouth, from the Latin, nil per os) but are allowed Chapstick and wet sponge swabs to moisten your very dry lips and mouth, since you've had a tube down your throat for three hours.
  • Consequently, they give you IV fluids for a day until you feel like you have to pee but really can't very well.
  • you are constantly barraged by beeping machines and alarms that alternately remind you of the beginning of the Back to the Future theme, ABC's Shoot That Poison Arrow, or Deee-Lite's Groove Is In The Heart.
  • you are constantly asked your name and date of birth when being intravenously given meds, having vital signs taken, and getting periodic Heparin shots in your belly to prevent clots (normal for any bed-ridden patients) and feel awkward for saying, "That's an easy one; today's my birthday!".
  • you have to avoid accidentally touching the very sensitive call button on the bed so as to not be one of those patients who cries wolf but also keep track of the cable at all times for when you do need to call.
  • you try to keep all necessary possessions (Kindle, phone, TV remote, tissues, portable urinal/pee jug) within arm's length on the table extending over the bed,
  • you try to keep said table over the bed so it's reachable from the right even though it's extending from the left.
  • you try to awkwardly and carefully use the urinal to prove you can at least partially empty your bladder.
  • you call for assistance to go to the bathroom, because that's far more natural than peeing lying down and -- even though you've been, "free to move about the cabin," for nine years -- you're suddenly a stroke patient again and tethered to an IV stand as well as compression cuffs periodically squeezing your legs to improve circulation and prevent blood clots.
  • you pee in a "hat" placed in the toilet to catch and measure whatever you can "evacuate".
  • you call for assistance to be returned to bed and have a bladder scan (basically, an ultrasound Doppler radar of the contents of your bladder, to check whether you're retaining fluids.
  • you're told that retention over 400 ml (you've been receiving 1000ml IV fluids/hour and only peeing 100 ml or so at a time, periodically), will require a "straight cath" (you're told this is not an uncommon side effect of general anesthesia and use of a Foley catheter during surgery (inserted and removed while under)). The Foley catheter was not left in place to prevent infection and allow an easier return to mobility and routine.
  • you endure four straight catheterizations over twelve hours or so to ensure your bladder is emptying, even though post-catheter scans still show remaining fluid. I have to admit, while certainly not my favorite pastime, I found the catheter less dreadful than I'd remembered from Mass General but still don't appreciate the menacing atmosphere it creates (talk about performance anxiety).
  • you blog from your phone to let people generally know how it's going.
  • you catch a couple How I Met Your Mother and Modern Family reruns (they still hold up) and get a decent night's sleep (aside from vital checks every three-to-four hours).
  • in the morning you get wheeled down to radiology for a swallow test which shows fluids are cleanly going down your newly-opened esophagus into your stomach, without any improper leakage (tastes disgusting but wonderful to feel a swallow make its full, proper journey).
  • you return to bed and are told you're no longer NPO and can have some water to drink.
  • you get unhooked from IV fluids and compression cuffs so you're unfettered to get out of bed and make your way to the bathroom.
  • you struggle a bit to pull yourself up, because you have to get out the left side of the bed and the five surgical incisions cut a somewhat tight, uncomfortable (but not too painful) dotted line across your abs.
  • once standing, you realize your gown isn't quite tied and that you'd rather not put on a show for the State inspectors nor risk tripping and instead just stand at the urinal.
  • you insist on getting credit for as much "output" as possible but have one more catheter for good measure, just to convince everyone you'll be fine going home.
  • you eat clear chicken both and a vanilla pudding for lunch (yum! and surprisingly filling).
  • you take a hallway stroll with the CNA to show you're stable.
  • you get back into bed for a few minutes.
  • you continue reading Julie Cohen's new novel, Louis & Louise and appreciate all the Post-It Notes it must have taken to write.
  • you get the okay to dress for discharge.
  • you get dressed, accidentally and painlessly pulling the IV needle from the back of your right hand.
  • you have the IV properly disposed of.
  • you greet Jamie and enlist her to bulldog anyone who might suggest you can't leave (no one does).
  • you receive discharge orders, including minor restrictions on heavy lifting (which you don't do anyway), a liquid diet for two days, followed by liquids and soft foods for the next week or so).
  • you get the hell outta Dodge.




Home is where:

  • the heart is.
  • you hang your hat.
  • you hang your head.
  • you can pee freely in the toilet without measuring anything but still feel like you should and kind of want to call the nurse and tell her you think you broke 400 ml.
  • you put on cozy fleece pajamas.
  • you lie in bed and appreciate how nice it is to have all your stuff on the bedside table at your right, not rolling anywhere and within easy reach.
  • you are constantly barraged by the sounds of tween and teen chatter.
  • you enjoy a delicious birthday dinner of a bowl of pureed asparagus and zucchini soup and a cookies and cream milkshake for dessert.
  • belly distended, you feel fuller than you have in months, almost sickeningly so.
  • you're reminded of childhood, post-Broadway-show dinners at Il Vagabondo, gorging on veal Parmigiana (before anyone knew what veal was) and the best New York cheesecake in the world (before anyone knew there were any other kinds of cheesecake) and feeling barely able to hoist your gut into the car for the ride back to Jersey.
  • you climb the stairs up to bed, because you can and no one's gonna tell you otherwise.
  • you catch up on Last Week Tonight.
  • you sleep blissfully in your own bed, only periodically waking to Like birthday wishes on Facebook and marvel at the sounds of your stomach churning away at the bounty of the night's feast. Will you ever be hungry again?
  • you get up at a reasonable hour to have actual coffee and get Gus off to school.
  • Smoothie at the ready, you still wonder when you'll actually want to put more in your gut, all the while enjoying the fact that you can.
  • you make a list of the differences between the hospital and home for the few, lovely saps who still follow this blog.
  • the heart is.

Monday, February 25, 2019

Missing Time

All I mean is that the day has flown by, not that I was abducted by aliens.
I'm writing on my phone, which will hopefully be more accurate than the one, gibberish post I remember doing in the rehab on my ipod Touch 2nd Generation. Let's see how autocorrect and predictive text has improved in the last 9 years.
So I got up at 430 this morning to take my meds with water, as I was supposed to do four hours before surgery. That left me plenty of time to shower with antibacterial soap before leaving at 630. Surgery was at 840,and the next thing I knew, it was 1140. Got to my room, I think, between one and two. Since then, I've chatted with Jamie and Gus, got to know my nurse and CNA, and watched TV . I can't eat or drink, so I'm getting pumped full of IV fluids. Since I don't have much of an appetite anyway, I haven't  been hungry. The toughest thing was that my bladder was filling, but I couldn't pee. It's apparently not an uncommon side effect of anesthesia, but I eventually had to get a catheter. Aside from a sore throat and some pain around my five small belly incisions, that was the worst part of the day.
Assuming all continues to go well tonight, I'll have my swallow test in the morning and head home. Hopefully, I'll talk to you then.

Sunday, February 24, 2019

TTFN

Without being morbid, fatalistic, melodramatic, or pessimistic, I feel compelled to write another Last Pre-Surgery Post.

While my upcoming procedure doesn't seem as menacing as, say, brain surgery, it is the first time I'll be going under General Anesthesia since my cranioplasty. While I don't remember personally being particularly worried at the time about that, I know it was stressful for my family (as seen in this post from Jamie). So I'm pleased at least to have an uneventful procedure under my belt . It's also nice to think that -- like putting my skull back together -- taking my throat apart should yield meaningful, positive benefits. But there's that horrible word (should). There are no guarantees, and I can't bring myself to go into this next step with a completely rosy demeanor.

I'm not proud to admit but also not ashamed to say that I recently re-watched both the entire Terminator and Matrix movie series and binged Netflix's time-and-space-defying Russian Doll and The Umbrella Academy. And if I've learned anything from this endeavor, it's that you make your own fate and that no prophecy or so-called inevitability can prevent you from being the master of your own life. Because if you limit yourself to a single path, you'll inevitably ruin the franchise.

Jumping intellectual properties and following the wisdom of Han Solo: "There's no mystical energy field that controls my destiny. It's all a lot of simple tricks and nonsense."

I feel in some ways like I'm at another crossroads. I believe my original semicolon pause gave me incredible insight into the human condition, and I'd like to continue honoring that journey as I move forward, whatever that progress looks like. I think I originally looked at what was happening to me as an opportunity, a second chance, to live my life to the fullest. I think I've been doing that on my own terms and with purpose. I'm proud of that, despite the fact that -- or maybe because -- my fullest doesn't include partying with Bono while snowboarding down Mount Everest on the back of a yeti. Now I think it may be time to truly start the rest of my sentence.

If all goes well, you should hear from me again the evening of Monday, February 25th (here and/or on Twitter and Facebook). I've also confirmed Jamie still has access to update the blog. If only I could find my damn living will (not morbid).

Saturday, February 09, 2019

Acceptable

It's now a pretty fast moving train, so try to keep up. Before making a consultation appointment, the surgeon wanted me to have a barium swallow test, just to have as much information as possible to confirm the achalasia diagnosis. Always a fan of new pictures and more data, I was happy to comply. It was also a test I'd already experienced at the rehab -- maybe three weeks after my stroke -- so I knew it wasn't terribly unpleasant. Basically, you just drink a mixture of water and Barium and trace the path of descent via X-Ray. Unfortunately, I don't have my own scan yet, but the picture below is a pretty good representation of what they showed me on the live display (though less twisty and without any release into the stomach: just a tower of backed-up liquid):


Picture
I'd be the Abby Normal on the left.

I met with the surgeon the next day, and he confirmed that I'm a perfect candidate for the Heller Myotomy but probably not the Fundoplication. While reflux is a fairly common result of the procedure (i.e. opening the esophagus up so everything can get down to the stomach also opens the gate for acid coming back up), he feels that adding restriction back to the lower esophagus can encourage recurrence of the achalasia. Heartburn in exchange for being able to eat again feels like a fair enough trade to me, as does the hopeful prevention of additional surgery down the road.

So I'm scheduled for the laparoscopic Heller Myotomy (4-5 small abdominal incisions) on February 25, with a planned overnight in the hospital, another swallow test the next morning to check for leaks, a return home, and about a week off work. Of course, while hopeful, I don't put a ton of stock in expected recovery times. After all, when you "expect," you cross your Pee and See Tea. Yeah, I know that's a stretch. Point is, the only things that are certain in life are death, taxes, and change. And I'm okay with that.

This latest chapter has been a good test of acceptance for me, in all its forms:

  • There's acceptance as resignation;
  • Acceptance as the relatively peaceful state at the end of the five stages of Kubler-Ross grief;
  • And acceptance as grin-and-bear-it tolerance.


As long as we're on that topic, why is The Museum of Tolerance about anti-Semitism and racism, as if putting up with minorities is something special that needs to be taught? Isn't it actually a Museum of the History of Intolerance, in which case the goal is to foster inherent Acceptance and Inclusion, not begrudging Tolerance?

Sorry. I know I digress. But over the past six months or so, I've been told a number of times that my situation was "unacceptable." And while I respect that what I've experienced is unpleasant for others to witness, I have to make peace with it on my own terms. That's the kind of Acceptance I'm aiming to achieve.

Saturday, January 26, 2019

The New Abnormal

The good news is that after my endoscopy, I was able to eat fairly normally for a couple of weeks. I managed a meaningful portion of Thanksgiving dinner (including a slice of pie), and felt optimistic. It was amazing how many people came out of the woodwork to recount stories of how they or a family member had gone through a similar procedure with long term success. But have I not already established that I'm anything but typical? By early December, my esophageal spasms returned if I ate too much or too quickly. For some measure of what that means, my Pizza and a Movie Night had become a single slice, nibbled over the course of a good ten minutes, with the end crust going to the dog. The good news is that Jamie bought me a Nutribullet for Hanukkah, so the bulk of my diet is able to come from very healthy smoothies. The bad news is that I continued to lose weight -- maybe another 10-15 pounds. The good news is that I'm a little closer to my BMI target. The bad news is that the BMI is stupid. The good news is that last week the gastroenterologist was able to get me in for an Esophageal Manometry to test the movement of my esophageal muscles and esophageal sphincter/valve. The good news is that added to my unpleasant collection of catheters. The bad news is that the test diagnosed me with Type II Achalasia, a rare (lucky me, always defying the odds) disorder which causes spasms in the esophagus and a failure of the valve which opens to release swallowed food into the stomach. Weeeeee!

So what's next? Well, I'll be seeing a surgeon soon to decide between two options:

  1. A repeat of the endoscopy, this time with a Botox injection to keep the valve open (and younger looking)
  2. A Heller Myotomy with Fundoplication
My understanding is that the second option, while a little more invasive, is more of a permanent fix than the Botox,which only lasts six months and can create scar tissue which would interfere with a subsequent Myotomy. Ironically, the Fundoplication (fun to say) is an add-on procedure to prevent the surgical opening of the esophageal sphincter from causing reflux (which was pretty much where this adventure began). Not that I'm eager to go under the laparoscopic knife, but I'm guessing that's what's in my relatively near future.


So, once again, I'm playing a bit of a waiting game.

Once upon a time -- between my aneurysm diagnosis and surgery -- I saw a psychotherapist to help me process everything I was confronting. He talked a lot about the anxiety of my limbo state, as I waited to discover my, "New Normal."

Two years after my stroke, in the spring of 2012, I remember a friend at my 20th college reunion commenting on how well I seemed to have adjusted to my predicament. She meant it as a compliment, and I took it as such -- I was definitely getting to a point where I was settling in to life as I then knew it, growing beyond my Pre-Stroke sense of self, and even surprising myself a bit. For instance, my wheelchair had been in the trunk  that entire weekend, but I'd never taken it out, opting instead to slowly shuffle around campus. So I was feeling pretty good about myself.

A few months later, seemingly out of nowhere, I had a grand mal seizure that scared the bejeezus out of Jamie and landed me in the ER. Fortunately, that turned out to be a one-off.

Six years later, I think I'd allowed myself to enjoy some complacency again, allowed myself to think I knew what I was doing, to casually go about my business.

Then came my back issues, taking me down a peg or two. Then came my swallowing issues, shrinking me down a size or six. 2018 was a year of the unexpected. I'm trying to let this year have its way with me without surprising me half to death. Is it even possible to be prepared for anything without being paranoid or creating self-fulfilling prophecies?

At my 25th college reunion, I developed a self-soothing technique when I woke Monday morning with the thought that overnight parking might be a towable offense on Sunday nights: Without quite, "...wishing for bad luck and knocking on wood...", I proceeded to paint a mental picture of what I would do if I were to look outside and discover my car gone: quite reasonably, I thought I could get a taxi or Uber to the impound lot; being Memorial Day, the lot might be closed; I could see if I could stay in the dorm one more night; if not, a hotel (I could probably take the next day off work). This technique eased my anxiety and made the act of peeking down the street to see if my car was still there far less intimidating, because I knew -- step by step -- how I would have handled the alternative. Turned out, the car right where I'd parked it the night before, and I'd peacefully planned for the worst without spiralling.

So as proud as I was to perform this anticipatory problem solving, not all hurdles are so easily seen coming down the road. Yes, some would probably have predicted -- given my age, weight gain, and asymmetrical muscle strength distribution -- that it was only a matter of time before my back or knees (or both) gave out on me. And while I appreciate application of the scientific method as much as the next devout agnostic, I also enjoy the delusion of living without fear of unintended consequences. For one thing, even Know-It-Alls don't know everything. No one predicted achalasia in my future, especially since there is no known correlation with strokes. And no one knows what the next thing will be. For all I know, the next unexpected course change in my life will be that there isn't one. Maybe that's just wishful thinking. Moreso, I have to be satisfied believing that no matter what challenges I face, I can withstand them. I believe the platitude is: "If you're handed it, you can handle it." I don't believe there's a plan for me, but I know my plan is to roll with the punches, whatever they may be. I think I've become pretty damn good at it.

Bring it on, 2019!