Colon Cancer

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.

O

(A fun photo in the cellar!)

O

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.

O

The day we closed, and a few months later.

O

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.)

O

O

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.

O

O

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!? =)

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.

O

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

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.

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!

O

O

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.

The London Wall (in red)

O

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!