First Night Went Well: 6/18

Visiting hours aren’t for a couple hours yet but I’ve been in touch with Michael’s overnight nurse and he’s doing well. I’ve also chatted with Michael briefly this morning and he’s exhausted but in great spirits. He says his biggest challenge is unrelenting thirst but he’s not allowed to have anything by mouth yet. Hospital staff says they hope to get his stomach tube out this morning and then he’ll be allowed water.

Today’s activities include sitting him up in a chair later this morning so he can start moving around and we’ll also see the doctor today for a full report. The brief highlights we got from the ICU surgeon last night were really, really good. The major, most dangerous concerns they had about the tumor placement and the procedure itself ended up not being issues and preliminary reports indicate they didn’t have to do a whole lot of mucking around with things like his intestines, so that’s great news for his general recovery.

I will update again this afternoon or evening when I know more. I don’t have any details about recovery and expected length of stay yet but I’m sure we’ll find out today. In the meantime, know that Michael is out of the surgical/post-surgical woods, his vitals and labs are great, and his pain is being well managed (he says his biggest pain issue is back pain from all the lying down and immobility, not from the incision itself). And the most important tidbit bears repeating. THEY GOT THE WHOLE TUMOR!

Surgery Update: Excellent News

It took about nine hours, but the surgeon was able to remove the tumor! Michael is out of surgery but isn’t awake so I haven’t seen him yet and have no other details. He will spend the night in ICU (as expected, we were told in advance) but I literally don’t know a single thing beyond that as I haven’t seen the doctor yet either. But the important things are that he is safe and the tumor is GONE.

I will not update again until tomorrow but by then I should have a lot more information to share. Thank you all for your support.

Lisa

Information on My Upcoming Surgery

Greetings, friends and family.

If you’re reading this post, it’s because you’re one of the folks who I want to keep in the loop on the outcome of my upcoming surgery. I want to be able to keep you updated on my status while I’m in Miami, and I’ve decided to use my personal blog as the medium for doing so. Updates will be posted here, by either Lisa or myself, all using the same password I shared with you to gain access to this post. This is going to be a one-way means of transmitting data, so I’m going to be disabling comments on any of these posts as well.

I apologize for how very formal this all seems, but we’re under a tremendous amount of cognitive load staying on top of everything we need to do and process about my surgery, and we need to minimize the number of communication threads we have to keep track of through my procedure and recovery.

Where things currently stand

I am heading to Miami this week for a procedure that will, ideally, remove most or all of the tumor and part of my pancreas. My surgical team seems very confident that they will be able to complete this surgery but, if they are not, they will have had a first-hand view of the situation inside of me and will be able to predict more accurately what my next steps will be (most likely some kind of transplant).

The surgery is happening on June 17th. When I am out of surgery and we know what was done and what my recovery is going to look like Lisa will post that information here.

Many of you have asked if there’s anything you can do to help and, honestly, there really is not. We have arranged for pet and house sitters to take care of the house while we are gone, I have fantastic insurance, and Lisa has worked hard to make sure all the paperwork and details have been addressed with the hospital. At this point, it’s just a matter of waiting.

During my surgery in Miami I will only be able to have one person in the waiting room, and when I come out of surgery I will be recovering in the Intensive Care Unit so access to me is, again, incredibly limited. A few people have offered to come to Miami to be there for us, and while that’s an amazingly kind gesture it is not something we could take you up on.

I do have two favors to ask of everyone, however.

First, please don’t share the password to this blog or the information in it with anyone. I’ve been open about all of this since I was diagnosed but it’s still a very personal and difficult situation that’s not for public consumption, especially at this particular juncture.

Second, please do not reach out to Lisa right now. She is grateful for everyone’s continued support but needs to focus on all the moving parts of my care, recovery, patient advocacy in the hospital, travel, insurance logistics, and FMLA requirements to make sure nothing slips through the cracks.

We cannot thank all of you enough for your support, positive vibes, and help over the last few years. It has been a rough go, and it’s still going to be for a while yet, but I truly believe that we’re going to have a positive outcome very soon.

Thank you all for your continued love and support.

If you haven’t already, you can subscribe to my blog using the links below this post. This will ensure you are notified as soon as possible when new updates are posted here to blog. The password for all these posts will be the same.

Backstory

Because I cannot be sure who knows what about where things currently stand, here’s a brief rundown of my diagnosis, prognosis, the anticipated procedure, and expected recovery timeline.

  • I have a Pancreatic Neuroendocrine Tumor on the head of my pancreas. It is 15cm by 13cm by 2cm large. It was diagnosed on July 26th of 2022. I have been through several rounds of chemotherapy and one round of immunotherapy to try and get the mass to decrease in size, but none of them have worked. The tumor does not have the proper receptors to attempt radiation therapy. The tumor is malignant, but it has not metastasized into any other areas of my body yet and I am, for the most part, asymptomatic. I have several issues going on that are very likely related to the mass, but those are mostly due to the fact that it’s just this big thing pushing on all the surrounding organs. Speaking of…
  • The primary complicating factor in treating my tumor, and why it’s necessary to do so, is the fact that it has occluded (blocked) my Superior Mesenteric Vein (SMV). This vein carries blood from the stomach to the liver (so it’s, you know, important). My body has adapted and the blood is still flowing as it should through nearby blood vessels, but they are not designed for this kind of work and have grown larger than they should be as a result of doing it. Two different surgeons have deferred taking my case because of this occlusion as it’s a very risky procedure. The surgeon I’m seeing in Miami is a specialist who has been doing these types of procedures for 40 years.
  • I will be recovering in the hospital for approximately two weeks, assuming the procedure goes as planned. When I come home, I’ll be recovering for several more months. This is a massively invasive procedure, and I will essentially have to rebuild all my core muscle strength from nothing.

The perfect space doesn’t exi…

You get to build your perfect space for reading and writing. What’s it like?

This image was created using DALL-E, an AI program developed by OpenAI, based on a text prompt describing a customized reading retreat. The image is AI-generated and subject to OpenAI’s usage policy.

This is an interesting question, largely because I have been wondering this myself a lot lately. I used to read constantly, and I wrote a lot more as well. The fact that I do not do so as much now bugs the hell out of me, and I occasionally have spurts where I try to get back in the habit of doing both.

I have, for example, been using my phone to compose posts for this blog. For some reason I am finding that particularly frustrating this morning, but I think I just sorted out why. Anyway…

My perfect space for reading and writing would start with a chair I can sit comfortably in for long periods. I assume that sounds basic, but the fact is I have not been able to find one in a very long time. Either the chair starts to hurt my back after a while or I cannot hold a book at the right angle.

It would have a small fridge for beverages and snacks, and (of course) a coffee maker. Preferably one attached to a water line for minimal refill effort.

It would need to be cool and cozy. A fireplace would be nice. A room with a nice view where I could contemplate nature when I felt the need to pause and reflect for a few. Someplace quiet, with minimal distractions and perhaps built inside of a faraday cage so the internet would not follow me in.

I suppose none of this is terribly original but it sounds pretty great to me.

You never forget your first

What is your all time favorite automobile?

This image was created using DALL-E, an AI program developed by OpenAI, based on a text prompt describing a white 1964 Chrysler Newport Sedan. The image is AI-generated and subject to OpenAI’s usage policy

My first car was a white 1964 Chrysler Newport Sedan. It was my best car.

I “inherited” it from my Grandfather sometime in the late 90’s. If I had to guess I would say it was 1988. My Grandfather was still alive when I got it, but the family had removed it from his house when he wouldn’t stop driving despite the fact that he could hardly hear or see.

The last time I rode in that car with him was quite the experience, let me tell you. I distinctly remember my grandmother yelling at him what the color of the lights were and when he needed to stop.

I learned how to drive in that car. Not legally, mind you. When my Mother and her partner would leave town I would take the car out, pick up my friends, and go joy riding. I eventually got busted for doing this because they checked the odometer against the mileage that was on the car before they left.

Another interesting side note to that – I still straight up lied about it and refused to take responsibility. I was quite the asshole as a teenager.

In any case, when I was legally able to drive I was given the Newport. I promptly dubbed it Bessie, the Hungry Heifer, because fuel efficiency was not a thing that mattered when that beautiful beast was built. My Grandfather had taken immaculate care of that car and everything still worked, up to and including the totally awesome PUSH BUTTON GEAR SHIFT.

Retro Sci-Fi console vibes galore, my friends.

I have probably told this story here on multiple occasions, but the abbreviated sad end to my time with Bessie was when I completely totaled it by driving like an asshole. I almost killed a small child in the process, not to mention the three passengers that were in the car with me, but Bessie was the only actual casualty that day.

I have always wanted to replace that car, but of course as the years have passed that has become more and more of an increasingly expensive pipe dream. Still, no car I have had since has come close to being as awesome as The Hungry Heifer.

An Unexpected Party

Describe a man who has positively impacted your life.

Image created by OpenAI’s DALL·E, an AI model designed for generating digital images. The image depicts an older man handing a boy a copy of The Hobbit. Only their hands are visible.

This kind of question is complicated for me. My father left home when I was very young, and while I have fond memories of him because of our interactions when I was in my twenties, he really did not have much of a positive impact on my life.

Then there was Dick, the man my mother spent over two decades with but who never got off his ass and married her. My feelings about Dick are complicated, but I will give him credit for trying. He came into my life when I was a rebellious teenager and did his best to “whip me into shape,” but most of his efforts were not only ineffective but had the opposite impact on me (I rebelled more).

In between the two, though…We had a very odd extended family during those years. My Mother was a bartender, and she built a village around us of “aunts” and “uncles” who all contributed in some way to trying to help her raise her kids. Make no mistake, these were hard-drinking party people who, for the most part, would have made horrible full-time parents. As a collective, though, they helped form a community around us that was loving and warm and full of joy. When I think of “family” I think of these people. I only think of my biological family in terms of the events they came to with my “real” family.

An example – The one Christmas tradition I miss the most is Christmas breakfast. Mom opened her house to the tribe, and spent the entire morning cooking as they wandered through. It was amazing. Laughter and good food and (of course) plenty of Bloody Mary’s. That was Christmas.

During this time a lot of men helped to step in and be “father” figures for me. Taking me on camping trips, helping with school projects, talking to me about “guy” things. That kind of stuff.

The man who made the biggest impact on me during that time was Jack Chinn. He was a standard member of that group. Hard drinking, chain smoking, partying so hard he put himself into an early grave.

But he was also a big geek. And he recognized me as one of his own.

Jack gave me my first copies of The Hobbit and The Lord of the Rings trilogy,

I do not remember which birthday it was, but definitely in my early teen years. He told me at the time to read The Hobbit but to hold off on the others until I was older (he was dead on about that…it was not until I was much older that I could truly appreciate the other novels). Jack opened my eyes to a whole new world, and there was no turning back.

Jack also took me to see Flash Gordon. He exposed me to many different genres of science fiction and fantasy. His influence sparked an interest in Dungeons and Dragons, and my love of role-playing drew a direct line to my acting career.

Amusingly, I stumbled across his Gor novels at one point. Thankfully, he quickly steered me away from THOSE (I found them on my own when it was age-appropriate for me to do so).

There are a lot of men who had impact on my life, but Jack was one of the standouts. I miss him, and wish I could have gotten to know him better as an adult and friend, but as one of my many father figures he was damn near the best.

Daily Writing Prompt 12.11.2023

What are your favorite physical activities or exercises?

Walking. There is no other answer. This was easy.

A picture taken during one of my morning walks.

Every time I have hit and maintained a weight goal in my life it was during a time I walked daily.

I have much more mental clarity on days that start with a one hour walk.

I spend my time walking listening to audio books or podcasts that entertain me or enrich my life (or both).

The time I spend walking is 100% self-care and it makes me feel as though I am taking care of myself.

I also get a lot of work done while I am walking, and my notes to myself frequently result in a lot of productive activity during my work day.

I love lifting weights. I love running. But walking is the world champion of exercise in my eyes.

Daily Writing Prompt 12.09.2023

What’s your favorite cartoon?

Oh, wow. This is hard. Are we talking animated movie or cartoon show? Individual episode or series? Character? Gah! So many choices.

I think I am going to have to go with Star Trek: Lower Decks. It was a toss-up between that and Spider-Man: Into the Spider-Verse. I could also have picked from any number of animated shows I have watched throughout my life, but those two are the ones I immensely think of when I think of cartoons I love.

Lower Decks is, quite simply, some of the best Star Trek content that has ever been produced. It is smart, funny, engaging, and a love letter to the franchise that keeps getting better every season. My wife, who is not big on animated stuff and only got into Trek recently, agrees.

As far as Spider-Man is concerned? He has been my favorite hero since I was in my early teens, and Into the Spider-Verse was quite simply the best representation of the universe outside of the comics in my opinion. I also saw it in the theater with my son, so it has a special place in my heart for that reason as well.

Daily Writing Prompt 12.02.2023

Are you more of a night or morning person?

These days? Definitely a morning person. Although I honestly think I was always a morning person who simply lived a life that included a social life that was not conducive to being one.

When I was in my teens and early twenties I was definitely a night owl. I would stay up late gaming, going to late-night movies (RHPS cast member because of course), or dancing. I was not much of a “party” person, but that did not prevent me from seeing the ugly side of twenty-four hour diners on many occasions.

When I become a parent that started to change. I was the overnight feeder, so I would still spend a lot of time in the middle of the night online, but the necessities involved in being a father required me to be up earlier in the day. So, eventually, did my Monday-Friday, 9-5 job. But I tried! I spent many years getting only 4-5 hours of sleep because I was up too late with my night owl friends.

I take after my Father now. When he was in town (Coast Guard deployments) he was always up before dawn and making breakfast (regardless of how much he drank the night before). He was raised on a farm and that was just what you did. I started transitioning to that kind of schedule back in 2019, and the pandemic allowed it to really solidify. These days I am usually heading to bed by 7 and up by 5.

Unfortunately because of that whole cancer thing I am still tired all the time.