in a handbasket

 This handbasket walks into a bar. 
“Where are you from?” asks the bartender.
“HELLó to you, too,” says the handbasket, with a slight accent…

So if you’re wondering why it’s taken me so long to write again, I’d have to agree with you that the joke above is not good enough to warrant the three-and-a-half-month hiatus from your eyeballs. My apologies. 

In my defense, I have no defense. Not really. But, I will explain why I drug my pen. And yes, it did have something to do with drugs. Just kidding. Not kidding. One of those.

Let’s review. The reason I began this blog in the first place (August 2020) was because emails were an imperfect way to communicate with people, to keep those of you informed who wanted constant updates on my wellness, and not inundate those who didn’t. “Wellness”: a kitsch word designed to draw your attention away from the fact that there may only be a meager amount of wellness that I’m able to share with you. 

Hey, guess what? Here we go again. Except this time there’s zero wellness to be shared. And I didn’t know how to tell you. I especially didn’t know how to tell you considering I hadn’t yet told the most important person in my life—who happened to be ten years old. Yeah. So, that happened. Go ahead and tell a child that their mother is sicker than they thought days before their eleventh birthday while trying to stay upbeat. Images of that “handbasket” kept coming to mind.

So, since I’ve told him, I can now tell you: My health is worse. Understatement. 

Days before Phil and I had our important talk with Samson, the doctors told me I had one to two years to live—if I was REALLY lucky. It obviously could be less. I was about to start a new medication (via infusion) and it’s possible it could help. It’s also possible it could hurt. We didn’t know. This is what I told my son days before his birthday party. 

Here he is at his first breakfast as an eleven-year-old with a mom and a waffle. That’s one lucky mama.

See? We’re upbeat! No handbasket in sight!

Then, days after his party we got worse news. I ended up in the ER and found out my heart was now compromised. I have right side heart failure—and I have severe pulmonary hypertension. I could have a heart attack at any time, and this was why my oxygenation was so much worse. I went on diuretics to get rid of the fluid pooling around my legs and ankles—and around my heart. And they told me flat out: If the new infusion treatment doesn’t help, then we’re probably looking at months, not a year or two. Helló fiery handbasket! Gosh it's warm in here. 

That’s where we are now. I am doing everything they tell me to, to try to prolong this ride. I have my feet up. I take the drugs, including morphine, which helps me breathe and sometimes helps with the pain. Most of the time I sit up because of the reflux issues from my messed up trachea/esophagus (see this entry). And I have my feet above the level of my heart as often as I can—ergo I’ve mastered the uncomfortable Sitting V formation while doing computer and other sitting-down/V-formation tasks. 

Some of those tasks include resting/sleeping, as the medication and illness just make me tired most of the time. Go figure. What’s that all about? 

As you can imagine, Phil and Samson do most of the work around here because almost any exertion has me wheezing for air. I needed to get a new O2 concentrator that went past a five-liter flow because I was already on five. So, my new one goes to ten. Sometimes I turn it up to eleven. Woo-hoo! Party!

Over the past few weeks, friends and family have generously brought food to help out. And now that people are getting vaccinated, we’ve begun getting visits that include people MAKING food for us here while visiting. Doubly spectacular! 

Plus, folks are being respectful about not wearing me out, which I really appreciate since it’s sometimes hard to say no when you want to spend time with people—especially since we’ve all gone for so long without socialization. It’s taking a bit to get back into practice. Also, FYI, my voice is much worse, so if you’re going to visit, go ahead and learn sign language on your way here. Just kidding. Not kidding. One of those. Both?

Okay, because you asked—or will ask—I’ve had two of the infusions of that new medication so far. This is me during infusion #2.

The drug is called Remicade. The infusion takes about two and a half hours and so far I’ve had no adverse side effects (that I’m aware of). It seemed to be helping after the first one, but then the roller coaster of chronic illness hit and I cannot tell you now or yet if it’s helping or not. I have four more treatments about four weeks apart. The next one is June 21, the last one is at the end of October. Let’s give it time. I’ll keep you posted.

Thanks for taking this journey with me. Let’s hope the ride takes us a good long while…and that we remember to laugh. It’s not always as funny as we’d like. But hey, at least there are photos…in a handbasket! 

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**special thanks to ali for all the graphics assist. you rock!**

barium swallow

this is an email i sent to some on 13 may 2021. it is a companion piece to the blog entry i’m about to post. i publish it here to provide continuity and clarity to the impending 2021.06.07 posting. 

-----------------------------------------------

barium swallow.

so much fun. 

now i’m not complaining. really. as far as tests go this is not the worst by far. it is probably the most chalky though. and one of the most interactive ones. they have you stand on the xray on a platform. (see photo below.)

then they give you some fizzy stuff to drink. then the chalky stuff. then while you’re standing on the xray platform they put a pillow behind your head and move the contraption you’re on so that your whole body is now lying flat down. (see photo below.)

phil took the photo above from inside the control room behind a radiation shield. you see me lying flat with the radiology technician beside me telling me which way to turn. on the monitor you can see the fluid in my esophagus…or whatever body part that is.

then while you’re lying on your back, they have you turn your body 360 degrees while xraying you the entire time.

then they have you turn on your stomach and drink through a straw while they take more xrays. not so easy to drink this way.

this next photo is of some part of my body with some chalk in it. it kinda looks like a rooster, doesn’t it? maybe it’s just me. oh wait, it is just me.

after the procedure we went back to the car. i consumed the postponed sustenance and medication after fasting for the morning’s chalk entrée. i ate my more nutritious breakfast, took my waiting pills, and sipped my morning tea at last.

before we left the medical professionals, they basically confirmed what we had known anyway and what the doctors will call us later today or tomorrow to tell us: i still have bad reflux issues and need to keep taking medications and can’t lie down for 2-3 hours after eating and need to eat small portions when i do eat while maintaining an anti-acid diet.

okay. got it. blah blah blah.

so, that was my day beginning. all in all not a bad day, feeling okay. just a little chest pain. hoping tomorrow is better though since it doesn’t begin with a test. it also doesn’t begin with my not taking my meds right away. i’m just mostly tired today. but like i said, all in all… pretty good.

thanks for asking ; )

hope y’all are good too. probably not going to send out an update again unless there’s something to say. going to try to get the blog going next so i’m not sending out lots of emails and y’all can just check the blog if you want without getting peppered with lots of status emails.

get vaccinated. then you don’t have to wear a mask outside… or to visit me apparently ; ) that’s what the CDC says!

xoxox

~breathie 

guest blog post #2: phil

so it’s been an interesting month and change around skypalace. in my fantastical hopes of getting more timely blog posts out to y’all in the new year, i was conspired upon by said newest of years to not make it so. ergo, it’s february and here’s the first post. but, i have a good excuse… and, to explain it to you i present the first of what i hope are many guest posts by my valentine, phil (a.k.a. fill_space). 

Risky Business

Remember Risky Business with Tom Cruise? No? Me too not. Never saw it, or if I did, I did that thing I do where along with my fellow goldfish I forget a movie by the time the ending credits roll. Still, through cultural osmosis I did manage to absorb the scene where Cruise slides into the camera view in socks and undies and starts lip-synching Old Time Rock and Roll.

Like this (click to view):

Great scene, but I never did understand what was so risky about the whole business. 

Until a month ago.

My re-enactment of the scene had nothing to do with lip-synching in undies (I had pants on, at least) and everything to do with a ferocious gunfight. My enemy combatant was a 10-year-old of ill repute and no mercy, armed to the teeth with a Nerf gun and a bottomless supply of foam bullets. We had agreed to a 20-minute battle on a cool Friday evening. So cool it was that I decided to keep my socks on so my feet could stay warm. It’s only 20 minutes, I’d be careful not to slip on the wood floors.

It’s only 20 minutes!

The battle commenced, and I *was* careful, deftly negotiating turns about our kitchen and adjacent rooms, holding my own against the mortal enemy and his unrelenting attacks.

For a good five minutes, I was the epitome of caution.

Then the mercenary appeared at my heels unexpectedly. Can’t quite tell you exactly why this surprised me. We were in the midst of a damn Nerf battle, after all, so I shouldn’t have been expecting a singing telegram at that point. Regardless, Evil Assailant appeared suddenly and at point-blank range, leaving me no recourse but to initiate evasive kitchen maneuvers at warp speed.

“Down goes Lauder!” the announcer would have said. Stockinged feet went left, rest of me went right. Right into the floor. 

“Oh no,” I said some 50 times in a row, clutching my ankle. I remember thinking, Oh no, I cannot afford to get hurt here. Oh no, I’m the only one who goes out in the world, my family needs me. Oh no, why the hell did I keep my socks on!

My wife and boy helped me stand on one foot, from which position I hopped to the couch. It hurt, sure, but not like crazy, no shooting pain, and I could move my foot side to side and up and down, so I was reasonably sure it wasn’t broken. Probably just a humdinger of a bruise. Worst case maybe a sprain. Still, I knew better than to put weight on it.

Iced it at intervals the rest of the night, all the next day. A nurse friend told me you probably didn’t break it if it didn’t hurt badly, but if it doesn’t improve in a couple days you’ll want to get it checked.

Two days later it looked worse, pretty colors, balloon shape. Went to Urgent Care. Once the X-rays came back negative, they’d throw a splint on and I’d be on my way. I’d hobble a week or so, but I’d get back quickly to driving, shopping, interacting with the world, all the things I alone do in this household. And that would be that.

“Got your X-ray back, Mr. Lauder. See this dark gap here? You broke your ankle. Leg, actually. Fibula, right here where it meets the ankle.”

Silence.

I looked closely for the smile on the doc’s face, waiting for the slap on the back. “Just kidding! Had you there, didn’t I?!”

Smile never happened. Slap, either.

See that gap on the left? You don't want that.

“OK, now what?”

“We’ll get you an appointment with an orthopedist, get you fitted for a cast. You’ll probably be wearing it for 6 to 8 weeks.”

Oh no.

“Oh no” turned into oh something else the next day when the orthopedic nurse told me I’d need to talk to a trauma surgeon instead.

A SURGEON? One of those cutty-cutty people?

Let me interrupt at this point to mention that I have a strained relationship with All Things Medical. When we avoid each other, Medical and I, we get along great, we’re solid. When Medical gets in my face, on the other hand, “down goes Lauder” is always a possibility. It’s happened before.

So in case there’s a question in your mind, “surgeon” was not what I wanted to hear.

Nor was what Mr. Surgeon told me the next day: “You’ve got two options here, Mr. Lauder. #1, no surgery, we put you in a cast. Once we remove it, you’ll have pain in your ankle the rest of your life. You said you play racquetball? You won’t be playing racquetball.

“Option 2: surgery. Outpatient, 45-minute procedure, no general anesthesia, we put in a small plate and some screws, cinch it up, couple weeks with a splint, couple weeks with a walking boot, you’re back to normal. No pain, do everything you did before.”

Well, heck, that’s no choice at all, even for a medical-phobe. 

Bring on The Knife.

Surgery was set for January 15. It would be the first IV of my life, the anticipation of which was sub-optimal, many fold worse than the pain. But I made it through. And the surgery itself... well, they give you this miracle drug, Versed, that makes you remember NOTHING of the procedure. It’s like that gadget in Men In Black that obliterates your recollection of monsters forever. (Yes, the person who remembers nothing of movies remembers the memory-erasing device from a movie.) First I was getting wheeled in and seeing an operating room for the first time, then they asked me to show them my leg, then they said Beth was downstairs ready to pick me up. Wait, what? Amazing. Wish I could retroactively take Versed in a few other situations in my life. Like those alien abductions. The second one, anyway.

The best part of the experience was actually the advice Mr. Surgeon gave during our initial consultation. “Do yourself a favor and get a knee scooter. It’s not covered by insurance, but it’s worth it.” 

Sager words were never spoken.

This is a knee scooter.

This is me on a knee scooter.

This is a young boy, aka Evil Assailant, on a knee scooter.

This is me on my first test drive. (I got faster over time.)

This is me playing tennis on a knee scooter a couple days after surgery.

Knee scooters rock! Instead of miserably ka-clunk, ka-clunking my way around in crutches at a top speed of minus one, causing a pile-up of snails behind me giving me the antenna, I zoom around here like I own the place. Which, come to think of it, I do.

Seriously, this little buggy changes the whole experience of being hobbled. I call mine Steed. Trusty Steed and I gallop everywhere together. It’s a blast. You should get one! It’s possible you don’t have to break your leg to do so, but it does help justify the expense.

As a public service, once I’m back on my feet I’ll be going around the neighborhood offering to break people’s legs. “Hey, good morning, I’m your neighbor Phil from up the street. How’s your day going?” I’ll say, slapping the crowbar into my palm. “Look, this will suck at first. I’ll be honest, it’ll hurt you more than it hurts me. But afterward you’ll get yourself a knee scooter. You’ll thank me!”

My final doctor’s appointment is sometime this week, not sure when (2 days, 2 hours, 15 minutes, 42 seconds), and with luck there will be no more gap on the X-ray and Mr. Surgeon will tell me I’m good to go. You know, if someone had told me I HAD to commit felony stupid and break my leg, well, I’d say this whole thing has gone pretty well. Never had pain after the initial bang and oh no’s, never needed the heavy-artillery narcotics offered after surgery. Along the way I found that I can handle an IV, a significant lesson learned and sure to be of benefit when further infirmities greet me in my old[er] age. And I learned that any excuse for zooming around on a vehicle inside the house is worth it. Also, one more lesson learned, DON’T BLOODY RUN IN SOCKS ON A WOOD FLOOR. It’s risky business, that floor-sliding  thing.

During our consultation, Mr. Surgeon told me that once I healed up, I could recoup most of what I paid for the knee scooter by selling it on Craigslist.

Fat chance!