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


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


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):

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.