Survivor

Oh, hi. It’s me, Phill.

Health, Personal, Travel, Uncategorized

Since I recently updated my ancient Facebook account (I only look at it once or twice a year — Marketplace.) At any rate, probably best not to post anything to me there. I’m on Instagram as well if you’d like.

Since we’ve already had a lot of folks joining us here that I haven’t spoken to in quite a while, I thought I’d do a little bit of a catch up. (Yeah, this is going to be a very long post. I’ll intersperse some photos.)

J and I now live in Westchester, in a charming downtown, short walking distance from the train station and less than an hour from midtown Manhattan. A few blocks from the Hudson River. We bought this 1100 ft.² 3/1 project-house cottage just about six years ago.

The original part of the house was built in the 1840s, it was extended in the 1880s, and I’ve been renovating since we moved in.

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(A fun photo in the cellar!)

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It is truly my avocation. When we bought it, the first thing I did was tear the front room of the house off and rebuild the original covered porch. Every board, rail, and post — hand cut, all wood, all me, no pre-fab whatsoever.

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The day we closed, and a few months later.

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There was a big initial construction push; but then … two bouts of cancer, several operations, and finally a quadruple 10-hour operation with four Columbia specialists last July. This sidelined reno for about three years. I have my challenges, but I am absolutely fine now. I am nearing a year in complete remission. I’m officially disabled with the tag, parking spot in front of the house, etc. But, you probably wouldn’t know it just to look at me. It’s a neuropathy and chronic fatigue situation, besides the fact that they removed a lot of my insides. (Seriously.)

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Renovations resumed just recently in full! While we were on vacation, we had our close friend, nextdoor neighbor, and contractor tear down the 1 inch thick plaster-and-lathe ceiling in the large kitchen to expose the huge 180-year-old beams. (This was something I was never going to do on my own. Too big, awful, and unpleasant.) I’m now in the process of doing all the finishing work and putting the kitchen back together the way we want it. Very cottage-core, or course. The work is challenging, very creative, very satisfying, and I’ve learned to pace myself. Updates will come on that soon. It’s looking gorgeous.

I am, as always, a Director of Music and Organist at a local church, which I love. I’ve been there six years as well. My friends there were an enormous help during my very serious health challenges. I also teach piano and other instruments privately, but I’m very selective about who I teach, and only have seven students over three days, 30 minutes each.

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I suppose if I haven’t spoken to you in quite a while, I’ve also developed quite a travel bug. I was in London a few months ago, we were in the Catskills a week ago, I’m in Orlando in a week and a half, and in July I’m visiting my mom for a week in Tampa.

While I’m in Tampa, our contractor is tearing out the fiberglass tub/shower situation and putting in a huge, deep, wide tub. Also tiled walls, and vintage shower fixtures. (The tub will be a big help for me. One of the things that helps me most is doing my PT exercises while in hot/warm water.)

Who knows what August will bring!? =)

I’ll take the first two, but you can keep the ugly one.

Fiascos, Health, Mobility, Personal

I am at eight weeks post-surgery, and I’m now permitted to do a little bit more.

1. I played my first church service last Sunday (and had a great time catching up with friends), and 2. I taught an hour’s worth of piano lessons yesterday. A nice, slow start.

3. I got very lucky this morning.

I’m groggy in the mornings, even without major painkillers. So, I’m very careful. I wear slippers with some tread into the bathroom, I make sure I always have a hand on a pole or a niche while I’m in the shower. I step in and out very carefully, holding on. But today?

Today, a blowing fan got me.

Fall is close, and temperatures have been dropping into the 50s at night. It’s been cold in the morning. I got out of the shower today and realized the blowing fan was pointed directly at me. Freezing, I took a few steps away — off the rug, and onto the hex tile some of you probably remember I layed a few years ago.

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Of course, I ended up on the tile floor. I was flat on my back, which happens to house my recently-operated-on tailbone. I don’t know how I managed to land completely flat, but whatever Deity arranged it, thank you. If I had landed on my butt, this would have been a very, very different story. I’m fine, albeit a few steps backwards in the pain department.

I’m sure you expect our loving dogs ran in to see what the commotion was all about. Eli barks if he hears a footstep; nevermind 180 lbs. of adult human hitting the floor. Nope. Not a creature was stirring. Thanks, dogs.

Higgins and Eli

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Historically, when I’ve slipped and landed flat on my back (winter ice, usually), I’ve started to laugh. I mean really laugh. For some reason, I’ve always done it. I laughed today, staring up at the exhaust fan. Which is filthy.

However, I now have a strong health reason to order a re-do of the bathroom with vinyl plank. (Wink.) See how that works?

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.

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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.

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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.

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.

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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.

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Eli likes it.

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So, here we go! Some close-up pictures in the gallery below.

Have a great day!

The C Word

Health

No, no that C-word.

I had some great news this week that I need to share.

I was very, very ill a year ago. Four operations, one over eight hours. Four months of two kinds of daily treatments with extreme side effects. A bag for four months that my stomach juice went into. I think you can probably see where I’m going with this. I was quiet about it, very few people knew.

It’s gone, and I am without a doubt the happiest I’ve ever been in my life. So, I don’t name it anymore. I’ve found another way of talking about it — I make fun of it.

This illness starts with a C and rhymes with “prancer.” So we’ll just call it that. Prancer. They rank it too, according to how much it’s moved around — one, two, three, four. I had Page Flea Prancer.

When you have Prancer, you often have a blob. The blob starts with a T and rhymes with “bloomer.” I had a Big Bloomer. There’s a number they measure called your Bloomer Marker. Average is below 3.0 to 5.0.

I had a CAT Scan on Monday and saw my Zoologist yesterday. Absolutely clear. There are no cats inside me. My Bloomer Marker level was 1.38 — way great! I’m one year Prancer-free. =)