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

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

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.

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.

Over saturation

I’m very conscious of the fact that talking about this cancer situation constantly could be wearying or come across as some sort of effort to garner attention or sympathy. One of the things I have realized and accepted about myself in the last few years, though, is that sometimes talking about or sharing things that are going on in my life helps me process them. If I’m given the space to say “hey, this thing is challenging for me” and have that heard and acknowledged it makes it easier for me to figure out how to react.

It’s also just nice to be listened to sometimes.

But I don’t want to get annoying, so this is going to be the last update that I post about this situation that I consciously go out of my way to post to different social media feeds. WordPress allows me to automatically post my updates to my Twitter feed, and I intend to keep cross posting there. Or you can just bookmark my actual blog home page (does anyone even do that any more?).

Lisa has set up a private website where she will not only be aggregating my blog updates but posting more specific information about my treatment and recovery. If you would like information on how to access that site please reach out to one of us directly for information. We’re keeping access to that one pretty well controlled and will not be sharing the link publicly.

A few of you have asked how you can help. As of right now, we have everything we need and we already have a pretty hefty circle of friends and family who have volunteered to help us out with stuff around here if need be. We have excellent insurance and plenty of resources available to cover medical bills, so there isn’t a need to set up any kind of fund raising. If any of these things change we’ll absolutely let everyone know, but for right now we’re good. Promise. My priority in all of this is beating it, and I’m not going to let pride get in the way of doing that.

Once I have a treatment plan in hand we’ll sit down and figure out what the next few months look like for us, but for now this is what we know. Thanks again for all the support and positive thoughts.

Little “c”

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.

Well. OK then.

I will get directly to the point if this post. Here is the cut and paste summary of what I have sent a few folks directly…

I have a cancerous tumor in my pancreas. It is, by all indications, highly treatable and was caught very early. In some cases the actual treatment for this kind is to do nothing and see what happens. I already have a relationship with an oncologist I really like and will be following up with him.

At this point I really do not have much additional data. I meet with my oncologist on Friday to figure out what kind of treatment, if any, I will need to undergo.

I am, as I am sure you can understand, a little tweaked out by the news, but I am very optimistic. I have excellent insurance, and a fantastic support network. I also have a partner who has been, and will be, by my side to help me get through this. I would have preferred to not deal with this, but I am grateful for all the positive things that are in place around it.

More as I learn it and as I have the mental fortitude to share, but I figured it made sense to share what I know for now.

As President Bartlett likes to say…”What’s next?”

A very brief health update…

My first biopsy was negative (thyroid).

Next biopsy is Monday (liver/pancreas).

I am still asymptomatic for anything related to cancers in that area, but they saw a cyst big enough to warrant further investigation.

I feel like the iron supplements are starting to work and my energy levels are beginning to rise again. Still confident the ultimate issue is just going to be that I give blood too often, but will not be 100% sure if that until September after my Upper and Lower GI tests and my next set of labs.

Mentally I am drained but still feeling positive about the whole thing. Lisa combines her medical experience and research skills to be able to provide contextual answers for me when I rabbit hole too deep into bad “what if” scenarios. She also has a whole laundry list of questions she wants me to pose to our primary care doctor when this is all said and done about our lifestyle choices and what we might have done differently to prevent some of this. I strongly suspect my coffee intake is going to be an issue but for now I am refusing to acknowledge that possibility. I will cross that bridge when I officially cross into my 50’s this November. Damnit. In any case, she has been by my side through all of this and her support, as always, is a major contributor to my mental health.

This was not as brief as I intended it to be, but there it is.

I am NOT Iron Man

TL;DR Opener to this post – I was recently diagnosed with Iron Deficiency Anemia. I am working with several doctors to determine the cause and to resolve the situation. At the current time we have no reason to believe that there is any major underlying cause for this situation, but I’ve been getting a lot of lab work and tests done to make sure of that. Fatigue and low energy are two of the symptoms Iron Deficiency Anemia, and the emotional weight/uncertainty adds to the mix, so if we’ve seemed flaky, distant, canceled plans, or otherwise seemed preoccupied lately it’s probably got more to do with this than anything else and I’m sorry.

OK, so…Disclaimer out of the way to (hopefully) avoid seeming overly dramatic…

I give blood as often as I can. So much so that people who I’ve made friends recently have commented on the number of blood donor shirts I have (which is especially amusing to me because I don’t keep most of the shirts I get and I generally only wear them when I’m working out. The latest campaign at OneBlood has been super hero themed, though, and some of the shirts have been really cool). A few years ago, I started having issues with my Iron Levels being too low when I went in to give blood. Nothing startling, and they are usually able to get me into the acceptable range by warming up my hands, but I’ve had a few occasions when they have had to turn me away. My Primary Care physician was aware of it, and we’ve been monitoring the situation along with my regular lab work (I was already seeing her three times a year with lab work because of my Type II Diabetes). I was also taking Iron supplements, mainly so that I could keep giving blood.

In June of last years my Iron levels were high. In March of this year, they were incredibly high. I also have had very low blood pressure for a while and some circulatory issues, so my doctor suggested I stop taking the Iron supplements follow up with a heart specialist and a hematologist to have some routine tests done and see if anything else was going on.

The heart stuff was fine. More than fine, really. The doctor said that most people would envy the blood pressure levels I have and suggested that I should eat more salty snacks. No problems there. My tests there revealed two small cysts/lesions that he wanted me to have looked at via ultrasound (one on my thyroid, and one on my liver), but both he and my PCP have assured me that those are very common and not generally a cause for concern. The tests are a “you have insurance and it’s better to be safe than sorry” situation.

Now, the hematologist? See, the first thing I found out when I made the appointment was that hematologists seem to almost exclusive practice out of cancer centers. So that was fun. Nothing quite like sitting in a waiting room with a bunch of folks who are being treated for cancer to get the blood flowing. My PCP had ordered an upper GI for me last year because I, like my father before me, have GERD and it’s been several decades since I’d had a scan to see if I’d developed any complications from it (I have not). She also had me take a mail-order colon cancer test (the second one I’ve had since the low iron issues started), which again came back fine, so I wasn’t overly concerned with the cancer thing. Still, it was unnerving.

In any case, lab work and subsequent appointments with that doctor determined that Iron Overload was not my issue, and that my Ferritin levels indicated I had what he characterized as a “severe” Iron Deficiency. He asked me not to give blood for six months, told me to start taking Iron supplements again with the goal of seeing if I could tolerate two pills a day, and suggested that I get another Upper GI and a Lower GI just to be absolutely sure there wasn’t some kind of severe underlying medical condition.

This is the point where, in Eugene Morris Jerome’s family, they would whisper “cancer” at the dinner table.

Now what he thinks is happening is that this is all a result of my regular blood donations. Other than the tests and getting back on Iron, there’s nothing else to really be done at the moment. If I go back and see him at the end of summer and my Ferritin levels are still too low he’s going to administer a series of IV’s to resolve the situation. If not, and nothing came of the other tests, he’ll work with me to figure out how often I can donate blood and what my Iron supplementation routine should be.

In the meantime, I’m tired. Really tired. I’ve got some other situations I’ve been dealing with as well, including severe leg cramps, chest pains, numbness and tingling, and other circulatory issues that I had just assumed were the result of my Blood Glucose levels being too high. Which, fun thing to find out, can be the result of…IRON DEFICIENCY ANEMIA. My BG numbers have been steadily increasing over the last few years despite the fact that my diet, for the most part, hasn’t really changed…so naturally I chalked all my symptoms up to that. Oh, and the fatigue thing? So a symptom of high BG levels is frequent urination, so on top of being constantly tired I also wake up regularly (pretty much every two hours to the minute) to use the restroom…which adds to my fatigue.

I haven’t spoken “publicly” about all this for a variety of reasons, one of the main ones being that despite the fact that I am absolutely one of those people who gets a comfort out of sharing details about my life online, I’m also a person who finds thinks a lot of people exaggerate or dramatize health/mental issues to garner likes/popularity/sympathy and I think that’s really gross. Social media is rife with people being performative and I’m just not interested in being part of that. But I also recognize that I’ve made vague references to my health concerns on a few occasions lately and that some of this has bled over into our social interactions, so I wanted to at least put this out there to explain why maybe we’ve just not been as accessible or otherwise socially apt lately.

This is all against the backdrop of major personal issues that, while not directly impacting us are going to have long-lasting impacts on my extended family. These issues have been taking up a considerable amount of what little mental stamina I have, and they really came to a head back in late November/early December of last year.

Generally speaking, though? I’m “fine.” I’m tired. I’m dealing with some health issues that have the potential to be Very Serious but are much more likely to be easily solvable through supplements, diet, and exercise. I’ve had to focus very much on keeping my head on straight for a while now, so my interest in or ability to deal with static in our lives that isn’t related to these situations is virtually non-existent. I recently read about “fork theory”, which is like “spoon theory” but different in a way that resonates very strongly with me. On any given day I can deal with a certain number of forks being stuck into me before I’m “done.” The number of forks I can tolerate these days is minimal at best.

No Pride In Being Straight

Straight Ahead

I’m a cis-gendered, heterosexual, white male. I’m completely ok with all of these things, and I do not feel like any of them make me lesser or better than anyone else. They are just facts about me, no different than the fact that I have blue eyes and shave my head on a daily basis, and they are not things I am proud or ashamed of. They just are.

I’ve recently realized, however, that I have a major problem with being referred to as “straight.”

I grew up in the 80’s during the height of the HIV/AIDS crisis. When I was in my early teens I was very much impacted by the culture of fear that was aimed towards the LGBTQ+ community at that time. My peers and I called things that we did not like “gay.” If a male did something even remotely effeminate, they were ridiculed for being a “homo.” I could quickly elevate my voice to a “girlish” pitch, loosen my wrist, and evoke peals and peals of laughter from my companions by pretending to be a “fag.” Along with the laundry list of N-word jokes I knew, I had an equal number of “gay” jokes in my arsenal that I could whip out at a moments notice to any unwitting audience that was willing to listen.

I started to change in high school. I attribute most of that to the fact that I was in an arts magnet program and was actually exposed to, and became friends with, LGBTG+ people as a result. One of the most influential teachers I had at the time, Jay Marley, died after developing AIDS during my sophomore year in the program, and his loss absolutely devastated me. Like many people of my generation, I also attribute becoming part of the Rocky Horror Picture Show crowd to have opened my eyes in many ways about lifestyles and people that were different from those I had been exposed to growing up. My Mother also got a job in a restaurant that was owned, operated by, and largely catered to an LGBTQ+ crowd, so I had additional exposure as a result of that. As all of this was happening, I did a lot of self-evaluation and did not like what I saw so I attempted to do something about it. One of the things I had to work the hardest on was not referring to things that I disliked as “gay.”

At that time, where I grew up, “gay” was a slur. Something that was “gay” was never, ever, good. Moreover, any time the word “straight” was used it was generally in terms meant to express superiority over being “gay.” You never heard someone describe themselves as being “straight” unless it was to directly disabuse someone else of the notion that you were “gay.” Even the “straight edge” movement that went through the punk scene was flavored with homophobia, with the proponents typically being racists and homophobes on top of being against the use of drugs and alcohol (a trend that continues in groups like the Proud Boys today).

The more my social circle expanded, the more I came to realize that the term “straight” had been co-opted by people whom, as a general rule, were not the kind of people I wanted to associate with. So much so that even using the term to give directions became something I jokingly asked people to do (“We go forward in this car. Never go straight. It will kill you.”)

Obviously, times have changed. Being labeled as “straight” is, more often than not, seen as the “bad” thing these days. “Straight” has become synonymous with boring, inflexible, close-minded, uptight, and/or some other word that basically describes lame. Whenever someone in my social circles use the term now, it’s not because they are describing something they consider to be a positive trait of the individual in question. I cannot recall a single time in recent memory when I have heard someone describe another person as “straight” without it being done so in a manner that implies the person is “less than”. At it’s most charitable, it comes across as being almost pitying. Like the poor souls can’t help the way they are because they are just so “straight.”

The result of all this is that when the term is used to describe me, I bristle. In a way that even I find surprising. It’s a visceral reaction I physically feel, and it immediately puts me on the defensive. Even as I write this, I realize my reaction isn’t logical and this is one more thing I should add to the list of issues to talk about with my therapist, but for now it is what it is. Part of it is also because of the fact that while I’ve become very accepting of the fact that I am, in almost every way, utterly and completely average (and I’m happy with myself in that state), I still haven’t quite gotten over the hurdle of being OK with other people denigrating me personally for being so. I have found great comfort in the fact that many aspects of my life are routine, predictable, and unexciting. I’m not so good with people looking down on me as a result of it.

Before I wrap this up, I want to make something perfectly clear. I ascribe no ill intent to anyone who has ever referred to me as straight or to people who use that term to describe others or themselves. The whole reason I wrote this post is because I knew that my reaction to the term was not something that was necessarily rational, but one I needed to figure out for myself so that I could clearly express it. I’m also not going to hold it against anyone who designates me as straight in the future, whether they have read this post or not (although I will reserve the right to ask that they not if it happens). This is really just a data point I needed to sus out for myself and one I thought might be interesting to share.  

Media Bias

I get very annoyed when people blame the state of the world on The Media. Not because I think that The Media is some kind of infallible institution that is operating solely to make the world a better place. Far, far from it. I think The Media, on the whole, is driven exclusively by the desire to make money, with little to no regard for anything beyond doing so (including, unfortunately, actually reporting the truth).

And it’s not at all their fault.

It’s ours.

We get what we pay for, and we pay for sensationalism. We pay for sound bites. We pay for shoddy reporting that focuses on being first instead of being right. We pay for 24 hour news cycles that are filled with opinionated, blustering pundits. We pay for style over substance. We pay for a news cycle that looks more like The Real Housewives than Sixty Minutes.

We lap it up. Every. Single. Day.

So of course they give it to us. They have to if they want to survive. Look at the number of institutions who were once heralded as being stalwarts of integrity that are constantly diving deeper and deeper into the muck in an effort just to keep operating on a day-to-day basis. Why? Because we can’t be bothered to spend a little money to get the content that would have twenty years ago because we think that online should equate to “free.”

This, for the record, is also why we get the politicians we have. It’s not because of the media, and it’s not because of lobbyists, and it’s not because the Illuminati is pulling the puppet strings. It’s because we vote using the same criteria we use to choose what we consume for news and entertainment.

This is why manufacturing in the United States is a complete joke and why so much of our goods are produced in other countries. We want cheap TV’s, cheap phones, and cheap cars. We don’t care about the number of jobs that get lost or communities that are devastated because the companies in question cannot possibly produce the goods we want and the price we’re willing to pay. This is why we shop at Wal-Mart instead of the locally owned general store.

This is why so many restaurants struggle to provide quality food to their customers. We want a delicious, hand-made cheeseburger on a freshly baked bun with hand cut fries and a craft beer but we are only willing to pay $5 for it (oh, and let’s not forget how our gratuities decrease as the price of that burger goes up). This is why so many of the places we eat at that aren’t flat-out chain restaurants might as well be because their entire menu consists of food that can be purchased in bulk from Sysco.

It’s us. We have done this to ourselves. It’s our fault.

It is my fervent hope that we’ll come to our senses at some point and the market will respond accordingly, but as of right now all I can do is look around at the world and nod along with our old friend Pogo.

Image of the cartoon character Pogo, created and drawn by Walt Kelly.
“We have met the enemy, and he is us.” – Walt Kelly