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. 

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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