Tag Archives: pancreas

I’ve had bad days. It’s just one of those.

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If this year had gone the way it was supposed to, I’d still be basking in the afterglow of a two-week vacation in Hawaii with my family right now. I’d be getting ready to head over to Tampa for a rehearsal of Picasso at the Lapin Agile. I’d be getting amped up about the fact that in less than two weeks I was taking my son to Dragon Con with me for the first time.

Edit: TripIt just did me the “kindness” of reminding me that we’d still be IN Hawaii right now. Sigh.

I could go on. The point is that, for me, 2022 has felt like a long line of “oh, you thought this cool thing was going to happen? NAH.” and it feels like it’s not going to get better any time soon. I mean, for the first time in almost ten years I actually expressed a desire to make a big deal out of my birthday in November (the last time I really did so was for my 40th…I’m ok with indulging myself on milestone birthdays) and now I’m like “well, will I be doing anything other than laying around and recovering from surgery and/or dealing with the side effects of the potential radiation therapy I’ll likely need after?”

I’m just not in the best place about all “this” today. The double whammy of cancer and COVID is just a bit more than my brain was ready to accept and feeling trapped in the house and unable to take care of myself isn’t helping.

Oh, hey…so speaking of…guess what is even more pronounced when you mix cancer with COVID? Fatigue! Yay! At least, that’s been the case for me. Mind you, fatigue and energy level issues are what started me down the path that led to my diagnosis in the first place.

I can do this all day

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So on Tuesday night I got to spend about 20 minutes in the Shimberg with a few old friends and some folks I was excited to start working with. I know it was only about 20 minutes because I tested positive for COVID-19 and had to go home.

Friends, I’m about at my wits end.

The symptoms came on pretty fast. They had already started when I tested positive, but I hadn’t thought twice about the fact that I had a sore throat because the day before I had an Endoscopy. My assumption is that my immune system was compromised due to the number of invasive tests I’ve had lately, including the colonoscopy I had last week that probably wiped all the good gut biomes out of my system.

The symptoms have been mild-ish I suppose, but they have knocked me on my ass. The most persistent symptom I’ve had has been an incredibly sore throat, which seemed to peak overnight last night. I barely slept at all because the pain kept waking me up. No respiratory issues of note, and the sinus stuff seems to have passed. Dry cough, made more painful by the sore throat. Sitting up for extended periods makes me tired and I’ve got brain fog. Doctors have me on Paxlovid because of the cancer and my diabetes.

So yeah, this has pretty much sucked. Lisa has been taking amazing care of me and has, thankfully, remained asymptomatic with negative daily test results. We’ve split the house in two and when she comes back here to bring me things she has a KN95 on with a cloth mask to boot.

And y’all thought I was in my feels about this cancer situation before? This here pity party is an all night rave with no seats and $20 bottles of water. Honestly, what really upsets me the most about all this is that it pushed back my appointment at Moffitt and I really wanted to get that out of the way so I could figure out how my treatment is going to impact our lives in the next few months.

Now here’s a positive thing about all this – Many of you who have known me for a while have probably heard me talk about my first programming mentor, Wendell, and how one of the most valuable lessons he taught me was not to put my job before my health (he taught me this lesson by example…he worked himself to death). I was in the middle of writing a text message to Lisa about how I was going to “power through” the work I had to do on Wednesday before taking the rest of the day off. I realized I was heading down the path Wendell did and stopped that line of thought cold. I’m not dying because of my job, especially since EVERY co-worker I have has done nothing but emphasize how I need to focus on getting better.

You know, it’s kinda funny to me how the same thing keeps popping up in my head and has for the last few years. I’ve said for a long time that while Spider-Man is the super hero I find most relatable, Captain America is the one that inspires me. It’s kinda his thing, really. That scene in Avengers: Endgame comes to mind often and has a lot over the last three years. Oh come on, you know the scene I’m talking about if you’ve seen it. Cap has had his ass handed to him, his shield is broken, his friends are incapacitated, and he has a whole army coming his way. But he grimaces through the pain, tightens his broken shield on to his arm, and stands up to face what is coming. He doesn’t say it, but it’s the ongoing thread of “I can do this all day” that he has throughout his entire story arc. That’s where I’m at right now.

And when I’m done with my surgery and on the other side of this I’m getting myself a shield for my office.

Last dance.

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The last few days have been rough on me. Lisa and I were talking about my tumor on Friday and trying to picture how big it was. We knew it was 14cm by 11cm by 2cm, but we use the imperial system of measurement and, for me at least, centimeters sound tiny. They are not as tiny as I thought. Roughly speaking, Phil (I have named it Phil because I felt like it) is roughly 7 inches by 5.5 inches by 2 inches.

That is a lot bigger than I had imagined. Although it explains why my oncologist was surprised it did not hurt when he pressed down on my abdomen.

The size of the tumor changes nothing about my diagnosis or my prognosis. I get that, intellectually. But it is a big leap to go from “hey there is this tiny thing on my pancreas that needs to be snipped out” to “this thing is taking up serious real estate in your guts.”

So yeah, I have been depressed. I am also being very maudlin, and I cannot help myself from continually wondering if this will be my last [insert thing here]. Will Picasso be my last show? Will Dragon Con be my last vacation? Will this be the last time I close my eyes and fall asleep? Will this be the last evening I spend with my wife? My family? My friends? Will this be my last cheeseburger, and if so why the hell did I purchase it at McDonald’s?? Will this be the last time I have to shave my ears?

Ok, that one would not be so bad.

I am also struggling mightily with having empathy for the struggles others are going through. This is not necessarily a new feeling. For the last three years I have had to resist the urge to respond to every complaint I heard with “ok, sure…but have you lost a son?” Now I get to add “do you have Steve Jobs killing cancer?” to that annoying voice in my head. I want to be selfish and in my feels and am really struggling to give a damn that someone may have gotten the wrong latte at their daily Starbucks stop. It is unfair and self-centered, especially considering that having empathy for people and their own personal struggles is kind of a big deal to me, but I have my moments regardless.

I think I am coming through the other side of it, but I am still feeling very emotionally heavy right now. I am hoping that I will feel better after my appointment at Moffitt next week, and in the interim I am very much looking forward to being back in the Shimberg tonight for the first time since before the pandemic started. I have missed it terribly, and I could use a little theater magic right about now.

Little “c”

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We met with my oncologist this afternoon. He reinforced that if I had to get cancer in my pancreas this is, indeed, the best possible scenario. His exact way of wording it is that I have little “c” cancer instead of big “C” cancer.

Here are the specifics as I recall them (I am writing this on my phone while sitting in my car and killing time before a performance of Vulva Va-Voom: Hollywood Psychic. A show I am in as part of the Tampa Fringe Festival. Come see it).

I have what is known as a Pancreatic Neuroendocrine Tumor. It as an extremely rare form of pancreatic cancer, so yay me for finally being something other than average for a change. The important thing here is that it is not Adenocarcinoma, which accounts for 90% of all pancreatic cancers and is the big “C” one my doctor was referring to. The tumor I have is fairly large for a tumor and has likely been developing for years. It is possible that it was actually the cause of my Type II Diabetes and may have contributed to several other conditions I have been treated for over the last decade or so. What I have been diagnosed with is, by all accounts, very treatable and survivable.

The treatment is not going to be “easy” on me and I will be recovering for a while, but it is invasive surgery and that is pretty much par for the course for that kind of thing.

And yes, for those of you who are wondering, this is the exact same diagnosis Steve Jobs initially had, but I have one thing going for me he did not…I actually intend to let my doctors do something about it.

I have more tests to undergo to make absolutely sure this has not spread to or damaged other organs, and I am meeting with a surgeon at the Moffett Cancer Center as soon as I can get in to see one.

I am, I think understandably, unsettled by all of this and occasionally go deep into my feels and get all “why me?” I am not looking forward to the things that are now looming in my immediate future, but I am feeling very good about my chances of seeing the other side of it. I mean, Marvel just announced Secret Wars at the end of Phase 6 and I have to see how the Multiverse Saga plays out, so there really is not much choice in the matter.