Listen to Mama

Health, Mobility, Personal

Hello, friends!

All is well-ish here, and days are generally the same as the previous. I keep myself entertained-but-resting.

There is indeed healing progress, and it is indeed slow. I like to say I get a half-inch better each day, but I have six more feet to go.

I took my first drive today! One month anniversary of coming home? I think? I had a few prescriptions to pick up, and it’s a short distance on smooth (for Westchester) roads, so the pharmacy seemed like a good trial run.

It was fine. Just about what I expected. It hurt, but not disturbingly so. I don’t remember the drive completely unpleasantly, so we’ll call it a success. It made me feel good about returning to work in September.

Next week I’m back to no-restrictions food. I can now stand up without completely using my arms. I’m newly able to roll over to my other side without wincing or yelling, so again … progress!

If You’re Squeamish, Stop Here

I know it’s probably hard to comprehend the surgeries. I’m purposely vague about them at best. However. In the following, I am going to be much more specific. I think it’s worth talking about, because there’s a serious lesson to be learned.

Funny how they don’t tell you until afterwards, right? The lead doctor explained afterwards that it was a long, very “rough” operation. Open surgery (not laparoscopic), two different entry sites, three or four procedures involving three surgeons with different specialties.

My colon and part of my large intestine were removed, and the tumor was removed with them. Stents were put in tubes (and later taken out) to protect particular valves and stuff, and in other cases, bits and bobs were just removed altogether. Things were rearranged, reattached in different places, lots of internal muscle was gone through back and front, and then sutured back together. Staples in front came out a week after surgery, and I still have stitches in the two different sites. A bit of tail bone was taken out to be double-checked with a biopsy.

This followed a year+ of a horrible syndrome (worse than the cancer, honestly) called LARS that I ended up with from the first surgery. It happens to many, but wasn’t mentioned very much beforehand. Maybe a few sentences during an early consultation. In the midst of it, two of the doctors said it was the worst case they had ever seen. I didn’t eat solid food for about a year.

So, knowing what I know now, I have something important to say.

I mention the surgeries (etc) in detail to push you — stay up on your tests. Get the colonoscopy. If you’re over 35, listen to that nice Katie Couric and get the colonoscopy. You’re asleep. You won’t even know it happened. If you’re adverse to having something stuck up your butt while you are under sedation, keep in mind — you’re gonna have more things than you know what to do with stuck up your butt if you get sick.

Get the test. This cancer is trending younger and younger. I’m regularly seeing people in their thirties in my surgeon’s waiting room. Regularly.

A Doctor, a Nurse, and a Hospital Admin Walk Into a Bar …

Health, New York, Personal

Yeah, it’s a rant.

This is the second time, third really, that I’ve had a major procedure. After each surgery, I don’t ruminate on the privilege of working with surgeons at the top of the field. I don’t recall the awesome nurses that took such good care of me. I don’t think about the kind porters, who cheerfully do the shittiest job in the hospital.

All of that is completely overshadowed by the paperwork.

I remember the minefield of forms, faxes, and printed information that contradicts itself. I remember I go through this every time. I remember that I got a ton of forms, many of which I don’t understand. (And this is while I’m pained, permanently nauseated, and throwing up (among other things) several times a day.

I remember that even though all my doctors are affiliated with the same hospital, the left hand doesn’t know what the right is doing. I remember the surgeon assistant’s extremely irritated tone of voice and sudden coldness when I called a second time because I still didn’t understand something.

I thought we were friendly with each other. I didn’t bother to remind her that I’m on the spectrum (which is on my chart), easily overwhelmed, sometimes don’t understand things as other people do, and am on major painkillers.

I should not need seven (or more) piles of forms to deal with that all go to different places, some faxed, some emailed, one thing has to be done before one date and then another thing has to be done after another date, etc. A few of them go to people that I don’t even know who they are or what they do. And of course, I’m filling in all these forms with exactly the same information they have right in front of them on my charts & the portal.

O

What would I do if were not a reasonably intelligent, tenacious person who will go through every single detail (several times) making sure everything’s done and checked off and understood? (I can be downright pugnacious and aggressive when I’m not getting answers.) I can’t imagine the trouble an elderly widow who’s by herself, or someone who speaks a foreign language would have.

I also don’t much care for the (always) bold, UNNECESSARY CAPITALIZED, yellow highlighted passive-aggressive language repeatedly telling me I need to do this or that or they’ll cancel my surgery. As for the actual documents, they are poorly put together … and ugly. One looks like it was literally cut and paste. Like, with scissors and tape. You’d think someone would be embarrassed that these are coming out of a major teaching hospital.

O

And we are still using hand-writing to fill in these scans of hard-used copy machine copies, with me faxing them or running all over the place dropping them off. Welcome to 1986.

And then, I get a very politely worded email saying that we may need to pay a deposit for my surgery. Never had that happen before. We have to call some lady who I guess decides whether we’re risky or not. Or something? What is she going to do? Question our insurance? Run a credit check? Swab for my DNA?

Our country’s doctors and our up-to-the-minute facilities are the best in the world. Envied by most of the planet. But behind the masks and professional photos, I can assure you, it’s a dumpster fire.

Failing Your MHC Test

Health, Personal

“Maybe Have Covid,” that is.

I’d been feeling worse-than-terrible. Not just tired or having a rough patch. Truly, I would’ve gone to the ER if it got much worse. I took a Covid test today, and it was indeed positive. I have other stuff as well, so Covid on top of it is never an easy ride.

When the only thing I’m fit for is watching YouTube videos about primitive 1960s Soviet lo-fi synthesizers, I know I’m seriously ill.

Talked to the moms of my students and got that all squared away. One of their responses reminded me of the importance of being pro-active.

O

If you have a suspicion, take the test. This particular mom is immunocompromised, and was so thankful that I took a test, canceled the day, and spoke right up.

This is the world in which we now live. Covid may feel like a rough flu to one person, but could be very dangerous for another person.

School is back in session — keep your guard up. And your spirits. =)