Listen to Mama

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.

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.

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.

Well, My Friends, the Time has Come

Fiascos, Health, London, Personal, Travel

Let the music play on, play on, play on …

What is that? I think it’s a Lionel Richie song. Anyway —

They moved it up, and we have a surgery date. July 2! Truth is, I’m getting much worse, sick (to some degree) all day every day.

I am absolutely thrilled. This will end a year and a half of pain and nausea, and other things best not mentioned in mixed company. I haven’t eaten solid food in a year, or been to a movie, or gone anywhere much at all.

They’re re-routing my lower guts, and also taking out a small tumor. This stomach/GI syndrome forces you to live minute by minute. Yesterday, I felt kind of okay, and then threw up in a cup while driving on a winding mountain road. Thank God I had an empty cup in the car!

Although I have to say, the pre-surgery rigmarole, pre-visits, paperwork, phone calls, and prodding is unbelievable. If someone were elderly or just not-that-with-it, I don’t know how they would get it done.

I really am thinking positively though. I have already made a list of all my favorite restaurants and foods. You can’t imagine how happy it will make me when I can have a Pizza Hut pan pizza or Pad Thai!

I also just started the germination of a London trip. October is my usual month. It’ll be a good project for the next few months. I want to visit and photograph every ancient church within The City of London. (Not “Greater London.” That’s gigantic.) The actual City is very small, inside the ancient Roman & medieval city walls. I think there are about fifty churches.

In passing — you know how much of a Dickens fan I am. My addendum to that would be except Martin Chuzzlewit. Just started trying to get into it. Jeez. I really dislike it.

So, that’s what’s going on here. Hope you’re all well!

The Bouncer

Arts and Crafts, Health, Musical Instruments, Musician, Personal, Uncategorized, Webloggy

Hi, Friends!

I am good! A large part of that is because I came up with some projects (even video piano lessons!) that can be done from my sick-person bed in my sick-person room. (Also, I’ve been through this before and I know what to expect. That makes a big difference.)

I am indeed, right smack in the middle of radiation. The only side-effect I’m having is the extreme fatigue. But. Mixed with no-joke pain meds, my cantankerous gastrointestinal system, a bit of spectrum disorder, and a dash of neuropathy … by late afternoon I’m literally bouncing off things like a plodding pinball. (Nothing serious, only door frames.) But, I have lots of projects that don’t require standing up!

I’m scoring two silent films for theater organ, to be played live in the Fall.
I continue to hang stuff and fuss with things in my new safe-room. I mean bedroom.
I’m starting to draw diagrams for the little pipe organ I want to build. I finally found an octave-and-a-half set of the type of pipes I was looking for.

Hope you’re well too!

Bonus points if you can identify the woman on the bottom left in the silver picture frame. Any guesses? I’ll just tell you — it’s Linda Lee Porter, Cole Porter’s wife. That’s a prop that sat on the piano from a show I did. Thanks, Bonnie! =)

The Big C, Part II: the Musician’s Revenge

Health, Mobility, Personal

Well, friends. I’ve known for a few months but we’re just really getting started now. I have a tumor … again.

It’s small and near to where the first one was. I tend to be a do it or don’t person. This type of cancer is known for coming back near the same site again and again. I’m telling ya, get the colonoscopy. Patients are getting much younger. Patients age 41 to 50 tied my age group, and ages 31 to 40 are catching up very quickly.

Get the test. You’re asleep the whole time and you don’t notice a thing. If you don’t like the thought of something being stuck up your butt, believe me, if you get this disease, you’re gonna have more things stuck up your butt than you know what to do with.

With the ugly syndrome I was left with from last time, and the potential for this happening again (a friend told me her father had it five times), I’m not into it. Plus these unsolvable intestinal disasters and severe pain management.

So, I told them, “Take it all out. I don’t want it anymore.”

Yep. That absolutely means what you think it does. They will be removing the lowest portion of my intestines (and whatever else) and bypassing everything. I’ll have “the bag” and a sort of port (stoma) on my mid abdomen.

They’ve come along way, even since two years ago. You’d likely never know someone had one, and now they’re even doing surgeries where the bag is created from tissue inside you, and you just drain it like a tap. There are even more clever things they’re doing now. Irrigation instead of bags after healing, etc. I’ll eventually have to choose one. Lots of options. Surgery will be this summer.

Chemo and Radiation will start in April, although I’m already at the hospital quite a bit with tests and such.

I’m doing a few things differently this time concerning taking off work and making arrangements. It’ll serve me better, keep me happy, manage my panic issues a bit better, and it should work out nicely for the Church and my students. Don’t get me wrong, there will be plenty of time off. All my employer-related relationships are wonderful, and we have a good plan.

You see, this was the reason for the downstairs bedroom. I’m now five steps from my bed to the bathroom or kitchen, and I don’t have to do our super steep John Adamsesque staircase several times a day.

It is a lot of work to be sick! I think our national motto should be “the pharmacy will screw it up somehow.” But. We’ve made a safe, easy, comfortable space for me, and of course, I have my canine protector and companion.