First of all — Curse you, Netflix and Amazon Prime for fixing it so your films cannot be played via a projector. Good. I got that out of my system.
I just had the best day yesterday. No pain all day, no issues other than fatigue.
I’m working hard on my silent film scores. I’ve finished the Chaplin two-reeler and started the Harold Lloyd short! Then … Nosferatu!
(Gratuitous dogs photo.)
O
We now know surgery will be early July and eight weeks recuperationafter that. Then I want a vacation after recuperation. I have something specific in mind.
It’s funny how I arrived at this.
In the first Pirates of the Caribbean film, there was a short scene shot on a sandbar well out into the ocean somewhere, about ankle deep. I remember seeing the film at an invited premiere because Jonathan worked for Disney at the time. I saw that sandbar 15 years ago, and thought, “I want to go there.”
And I’ve been thinking about it ever since.
I found a specific bay on Bermuda that I really like. I’ll think about it.
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! =)
It’s been a very difficult week, but I find ways to keep my spirits up and my mind busy. Preparing for treatment to start … I remember what it was like and how I felt. That’s why we are preparing so well for this go round. (Going so far as to have an actual room built. LOL)
Bit of a “Stomach Attack” (that’s what I call them) Sunday/Monday, and I was in bed all week. If my hands were not on a piano or organ keyboard, I was lying right here in my little sanctuary 24/7. Short Version — one of my doctors (who is not my stomach doctor) suggested trying a little bit of solid food for a few days. I did so. Disaster.
I’m looking forward to playing the Easter Service tomorrow. I’m resting all day today and I’ll get up early to take my meds and let them fully kick in so I’m going in as strong as possible.
As far as keeping my mind busy, one of the things I have been doing is stocking up and clearing out my digital entertainment queues — Prime Video, Netflix, Audible, and Kindle are the main ones. I came across this movie and thought, “Well, I’d watch anything with Maggie Smith, Laura Linney, and Kathy Bates in it. It’s on Prime if you’re interested.
O
O
That’s about all that’s going on. I’m seeing the doctors on Wednesday for a chemo & radiation planning session. This whole being-seriously-ill thing really slows down time — it’s very bizarre.
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 doit 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.
O
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 insideyou, 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.
O
Eli likes it.
O
So, here we go! Some close-up pictures in the gallery below.
It’s been one day, and I am already, “Are they out of my house yet?,”
Tomorrow is what I call “Mezzo Buildio” — taping, spackling, finishing up some drywall issues, wiring the lamps.
As you know, I kind of exist in a “I never really feel well” state, so I have been managing myself pretty well. =) Haven’t tried to help, haven’t carried anything, continuing to rest up and recover from the few days of prep. Needless to say, the dogs are a challenge where construction is concerned.
There’s an organ in the kitchen. A LazyBoy by the pantry. A bedroom’s worth of furniture scattered all over the house. Our living room looks as if Little Nell might crawl out from underneath the piano at any particular point.
Sit Still Phill 