The C Word

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!? =)

The Tortoise and the Hare

Garden, Goals, Health, Mobility, Musician, Personal, Psychology, Shopping

It’s the old story I suppose — feeling a little better but acting like you feel a lot better.

I noticed today that pretty much every time I was home this week, I was sleeping. Like, all the time. So I reviewed my week.

Sunday is a five hour day, and much of that is playing the organ, hyper-focusing, teaching some parts, handling social anxiety when in a group. Blah blah.

Monday, I didn’t have anything going on officially, but I had errands to run and a bunch of music stuff to do at home. I wrote an arrangement for one tune and started on another.

Tuesday was a palliative care doc appointment and a run to the store on one side of town, and then a run to a store way on the other side of town. Then, 90 minutes of teaching and some house cleanup stuff.

Wednesday was a nutritionist appointment, and a bit of teaching. In between, I did some leaf blowing and dug up and replanted the three plants in the front yard. (Unknowingly, I originally planted them in a very buggy spot. The bugs were eating them.)

Today is Thursday, and of course, I woke up exhausted. I had a prescription to pick up, and a few things to grab at the store, so I forced myself out and did all that so I’d have the rest of the day with no commitments. Ugh. I was getting to the point where I was unknowingly dragging my feet and tripping every once in a while.

Real Life of course, does not go away. Adding to the usual tasks, there’s medical stuff that has to go on in between times, my food to be monitored and cooked, and pills to remember to take on a schedule. Not a huge deal, but another set of things to think about that all take time. Never mind liaising with Jonathan and getting basic household stuff taken care of. At least I moved the plants. 🪴

Yep. It takes a bit of time and effort to keep me standing, alive, friendly, and looking like I can accomplish something. And now, of course, as I’m reading this weekly roundup, I’m thinking, “What’s wrong with you?!” Simmer down!”

I had to pick up a prescription (it’s nearly my hobby at this point), so I grabbed a cup of my favorite coffee and grabbed some ice cream for a sequestering treat . (Recommendation – Oreo brand Cookies & Cream.)

I can’t believe it’s 2 o’clock already, however, now we rest for two days! If an asteroid hits the planet or the Hudson River breaks its banks, Tell Jonathan. He’ll wake me up. 😴

Resting is as Resting Does

Health, Home and Renovation, Musician

Not much different going on around here. As I’ve said, I’m a half inch better every day. At this point, I’d say I have 3 feet to go. Considerably better though.

I notice it in the little things. I realized my tailbone was healing because I can now lean back in a chair, rather than sitting stock straight upright like a schoolmarm on alert. I’ve been making my own food. Meds have been lessened. I can sit on the bed pretty much however I like (because it’s squishy).

Speaking of, Jonathan had the thought and is leading the charge redoing the master bedroom. Big changes actually — we are taking out a large section of the built-in closet/king bed/shelves. It’s a big room, so we’re going with the old-fashioned “bed in the middle of the room” thing. Of all styles, we arrived at Scandinavian. Simple and cozy.

The new bed, lamps, and rug (on my blue wood plank floor =)

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I’m excited to be going back to work in a few weeks — to both the church and teaching. I’ve pulled out some fancy organ music. You all know very well I wouldn’t play my first Sunday back without some pomp and circumstance! Although, not the actual song that title. That would be weird.

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Hope everyone is well, and as always, thanks for your comments and kind notes. They’re very much appreciated!

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.

Decommissioned

Health

Hello Friends,

I left the hospital Friday, and I am now at home recovering, very wobbly, and heavily medicated. Of course, they never really tell you how major it was until after you’re in recovery. I can’t really sit or stand, so most of my time is spent lying on my side.

I’m doing well and eating nicely, but standing up for more than a minute or two is still a real challenge. Sitting up is difficult as well, so there’s a lot of audiobook action going on around here.

I’m happy to be home, much more comfortable, and thankful to be taken care of by so many good friends. If I were guessing, I’d say I will be a bit more up on my feet in a week or two. At this point, it’s very much like still being in the hospital. For instance, I’m not able to climb even one step, I have to have help. Jonathan is home with me, a nurse visits, etc.

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Of course, knowing my constitution (and potential bad attitude), I loathed the hospital. Every single minute of it. At one point, they decided they had a better idea than the two years of med therapy my palliative care doctor and I had designed, and completely switched all my meds. I quite literally went crazy, crazy mad. It was terrifying. And then they switched the meds back, and it all went away. Funny how that works. But it’s all over now. =)

Thanks all for your cards, thoughts, and good wishes.

I won’t be very good at returning emails or texts for a while, but hope to speak to you all soon.

Phill