Disability

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.

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!

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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)

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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 Gathering Storm

Health

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.

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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.

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. =)