An update – SNAFU

I atent dead
Image generated by OpenAI’s Dall-E.

It’s been a bit since I sat down in front of the old blog here. This is such a common theme that it probably constitutes a significant percent amount of my web traffic. People search for “I haven’t posted in a while” and michaelcmcgreevy.com pops up to the top of the list.

That’s not true, of course. I don’t pay to advertise on Google so I don’t show up in any searches.

In any case, I wanted to take a few minutes to give an update on the state of Me for those of you who have been following along.

The last time I posted anything about my cancer was back in May of last year, and while it feels to me like a ton of changes have happened in that time frame the fact is that, for the most part, I’m personally in the same place I was back then. I still have a tumor. It’s still occluding a major blood vessel in my abdomen and it’s still inoperable. I’m still taking chemotherapy drugs to contain the tumor and keep it from growing any further, but at this point I have not seen any reduction in the size of the mass from that therapy. I’m still dealing with low energy levels much of the time and am still trying to juggle having a social life of any kind in conjunction with being completely unpredictable in terms of how I’m going to feel or how my schedule might need to change to accommodate medical procedures. The tumor is still Stage 1, well-differentiated, and has not metastasized.

In many ways, my situation is my new normal. I’ll let you decide if the “all fucked up” part of that applies.

I do have more information about my situation now, though, and if you’re interested you can keep reading to find out what the latest is.

After finding out that I was not a candidate for surgery in Tampa my oncologist at Moffitt put me on a different type of Chemotherapy called Lenvatinib. As was the routine with the combination of Capecitabine and Temozolomide that I was on prior to that, I had a CT after three months to see what changes, if any, showed up in my tumor. Instead of shrinking, the tumor appeared to have grown slightly. My doctor decided to take me off the Lenvatinib and put me back on CapTem, but before she did so she arranged for me to consult with a surgeon in New Orleans to get a second opinion on having the tumor resected or removed.

I met with that surgeon in late October, and he was as equally pessimistic about the potential of having a positive outcome from trying to remove the tumor. He mentioned that he could possibly be “convinced to give it a shot” if I was very passionate about that as an option, but Lisa and I both agreed that having to convince a surgeon to perform a potentially life-threatening surgical procedure is probably not the wisest course of action.

He did, however, suggest an alternative course of action. He said I might be a candidate for a dual-organ transplant, and he referred me to the University of Miami transplant center for an evaluation.

Things were a little hazy around this. After that meeting with him, I thought he was just talking about replacing my liver and pancreas. What I didn’t understand was why that was safe when just removing the tumor and/or pancreas was not. I also didn’t understand why my liver had to go, as the tumor is sharing a blood vessel with my pancreas and no cancer has spread to my liver yet.

I met with the surgeon in Miami last Monday, and I have those answers now.

I was not referred as a candidate for a dual-organ transplant. I was referred as a candidate for a procedure known as a Multi Visceral Organ Transplant (MVOT). The easiest way to explain this procedure is that, in essence, my abdominal cavity would be cleaned out and all the major organs and vessels in it would be transplanted from another donor as one solid unit. The only organs in that area that would remain intact would be my kidneys. The reason this is less risky to me, despite the amount of “stuff” being replaced, is that the number of tricky connections is significantly less. Instead of having to navigate severing and reconnecting many damaged blood vessels, they would be making relatively few and in places that are easier to get to/repair.

This is, of course, a major invasive procedure. I’d be in the hospital for weeks recovering, and Lisa and I would need to relocate to Miami for potentially as long as six months or more, depending on how my recovery is going. We’d need to find a place that we could move our entire family to, which includes our cats and rabbits, as leaving them behind for that long is simply not an option for us (even knowing that our friends would volunteer to feed them on a regular basis). It would be incredibly expensive, even with the housing allowance we have as part of our insurance (let’s face it…Miami is not a cheap place to live). While it would completely cure my cancer and (likely) my diabetes, I’d have to take powerful immunosuppressant drugs for the rest of my life.

If I decide not to go with this procedure, things would pretty much remain the way they are now. Chemotherapy to control the growth of the tumor, regular CT scans and a bi-annual PET scan to make sure it’s not growing and impacting other areas of my body. The big risk in that scenario is that if the tumor DID metastasize and it spread outside of the abdominal cavity I would no longer be a candidate for the MVOT. I’m also in relatively good health right now and am still considered young enough that it’s worth doing, and who knows what kind of damage I’m doing to my system while the diabetes persists.

So that’s where things stand. I’m still here. I’m still unsure of what my future looks like from one day to the next. I’m still trying to fight the good fight and keep a positive attitude about everything despite being bone-numbingly tired of all of this…mess. I’m still doing all this with my incredible partner and friend at my side, and still thankful I have her because I don’t know how I’d manage to keep my head on straight without her.

Like the sign says, I aint’ent dead yet.

Remembering Holly

Taken at a pizza place in Little Five Points, Atlanta before we went to Dragon*Con in 2002

This is another post that has been sitting in Drafts for years that I finally decided to wrap up and post.

My first memory of Holly Blain isn’t actually a memory about her at all. It’s a memory about her brother, Beau.

I was sitting in the gym at Tyrone Middle School, when this kid I had never met before walks up to me. “Hi,” he says. “My name is Beau. My sister says you play Dungeons and Dragons and we should be friends.”

And, just like that, we were.

Holly was one year ahead of me at Tyrone, and we must have known each other in some kind of very tangential way, but I don’t remember ever really associating with her before that day. But somehow or other she knew that Beau and I should be friends, so she told her brother to go up to me and make it happen.

She did that kind of thing all the time. When Holly decided that something should be a certain way, she just expected the world to fall in line. If you didn’t know her, this behavior would come off as kind of selfish and irritating. I’ll be honest with you – it came off as a bit selfish and irritating even if you did.

But here’s what you have to understand about Holly. Here’s why Holly was so damn special. Holly did what she wanted to do, when she wanted to do it, and she believed that we should all be able to do that, and she would do anything in her power to make sure that you had the kind of freedom she wanted for herself.

I guess I can only explain this by way of personal example. When we were young, and going to Bennigan’s every Tuesday night to dance, Holly would go whether or not she had the money to get in the door. If she didn’t, she’d just count on being able to find someone who was willing to pay her way or convince the door man to let her in for free “this one time.” Annoying, right? But if she found out you wanted to go and didn’t have the money to get in the door, she’d offer to find a way to get you in as well. Whenever Holly came over to my house she would jump on my computer and use it without asking my permission first, and if you know anything at all about me you know I’m highly personal when it comes to my electronic devices (and, in defense of my highly protective nature, one time when she did this she saw something in my email that she really should not have seen). I had to start locking my computer and enable a guest account whenever she came around. Holly was the kind of person who had no problem whatsoever with someone using her computer without asking, so it never occurred to her to ask to use mine. If Holly was cold at my house she would adjust the thermostat, but if a guest was cold in her house she would expect them to do the same. You see my point? Holly did whatever she wanted to do, and she wanted YOU to do whatever YOU wanted to do, and if those two things happened to conflict with each other you just talk it out and smile and move on and keep on loving each other.

When I learned that she was flying to Texas to go to Butt-Numb-A-Thon even though her application had not been approved, I just had to smile. That was so very typical of Holly. Deny her admission to an event? Fine. She’d go anyway and hope she could change your mind once she got there, and even if she couldn’t she’d just enjoy the experience of trying.

That was Holly.

I started this post shortly after Holly passed last year. I did so knowing I would be heading to her memorial service and I wanted to get my thoughts sorted out before I did so. What I said at the service was pretty close to what I ended up writing here. I worried then that perhaps I might offend someone by what I was saying. Unless you really paid attention to what I was saying it was kind of easy to misinterpret my words as a criticism of her behaviors and personality when that was the exact opposite of what I was trying to do. I had the same feelings when I spoke at the funeral of her brother, Beau, where I also had words that were, perhaps, not the standard things you would hear in a eulogy.

But if there is one thing that I loved and admired about both of them it’s that they were very self-aware. They knew who they were, and how society perceived them, and it didn’t bother them if perhaps some of those perceptions cast them in a negative light.

As I get older and become more and more “conservative” and set in my ways, I think often of them and wonder how long they would have been able to keep that up. I know it’s a very unconventional way to think about a person, but as I frequently do I think about the quote from the end of Batman: The Dark Knight. “You either die a hero or live long enough to see yourself become the villain.” Part of me believes that Holly and Beau were powerful enough forces of nature that they would have successfully fought the push to compromise on their core beliefs as they got older, and part of me is thankful I never had to see the opposite happen. 

Which is a very selfish way of remembering them, I suppose, but there it is. 

Where I want to be and who I want to be

This post was “written” almost a year ago. I was experimenting with using dictation tools to write a post on my morning walk, and the end result was pretty scattered and required a lot of editing. I got about half way done, had to move on to other things, and promptly forgot about it. This morning I stumbled across that draft in progress and decided to finish it up. Honestly, it was rough. I had to remember what was on my mind a year ago, and I went off on some completely unrelated side rant that was about a thousand words long and needed to be edited out. I think the end result here is worth posting, though, so here it is.

The company I work for recently went through a major reorganization. A new department was created for our business unit and our team was moved into a new vertical under a different executive. A VP position was created to head up the new department, and another senior leader was given that position to help align all of our Agile/Lean/Project/Strategic activities.

It’s a lot of change. I was, admittedly, quite shaken when it happened. I’ve had my cheese moved more than once at my current job, but this one felt overwhelming at first. I don’t feel that way any more, and in fact I’m really excited about all the changes, but that initial jolt was pretty big.

One of the reasons it was such a shock to my system is because I was moved into what we are calling the “process” vertical in our organization. As someone who believes in and supports Agile, being in a group that seems to be on the “processes and tools” side of the “Individuals and Interactions” equation wasn’t a look I was happy with. I’m still not entirely keen on the optics around it, if I’m being honest, but I do believe that in our current structure we landed in the right place.

In any case, I was meeting with my new boss on Monday (the above mentioned Vice President of our newly formed department), and we were having one of many “getting to know you” style conversations we’ve had since the change. While we’ve worked together for many years at this point and have a perfectly amiable working relationship, we don’t really know each other all that well so we’re spending some time working on that. In our conversation on Monday, he asked me where I wanted to be in five to ten years.

Now I need to go ahead and state for the record that he knows about my cancer and said right up front that he realized his prepared topic for the day probably wasn’t something that was top of mind for me at the moment. I concurred and stated that “alive” was really my top-of-mind goal, but since I intended to achieve that one it was totally cool to talk about what else I’d like to be doing and we did so. In the time that has passed I’ve thought about it some more, and that was the path I took to starting this post.

When I reflect on my early days in software development, I see a perfect example of how my mind works. My first job was with a company that sold ColdFusion based auction software. The original person who wrote the code did so in a way that was most efficient at the time he wrote it. The internet was slow, and any extra white space in the background of a page could cause longer load times, so he removed any characters that were “extraneous” from his code.

The result, while readable to a visitor of the site, was a solid mass of text that was nearly impossible to decipher on the back end.

As my responsibilities there grew I eventually got access to that code base and was charged with helping to fix/improve the software. Every time I had to access a page, I would poke around in it and make it better. I would add comments where none existed. I would explicitly name variables from x or y. I would tab-delimit nested code. I would update deprecated functions or replace code blocks that were inefficient. What I was doing was removing technical debt, but I had no concept of what that was at the time. I just wanted to understand how the code worked, and I wanted to help make it better.

Which is a perfect example of how I look at the world. I want to understand how it works, and I want to make it better. So when I think about where I want to be in five or ten years, my answer is really just as simple as that – I want to have made the world a little bit better. To do so I need to keep learning. To do so I need to look for ways I can improve the code of the world around me, whether that is in my personal life or professional one. I want to take my experience, my influence, and my knowledge and apply it in little ways to make incremental improvements for as many people as I can.

But, ultimately? I still want to be here.

Fail Whales

It’s been a week since I deactivated my Twitter account, and I don’t miss it.

I suppose that’s not a 100% accurate statement because if it was completely out of mind I wouldn’t be writing a blog post about it, but I can honestly say that I haven’t once been tempted to reactivate my account or even go to the site. I have, in fact, actively avoided doing so and have even been reluctant to follow people on Mastodon who are using the @twitter.com instance to post content.  

Shortly before deactivating I ruminated on some of the reasons I was hesitant to do so, and one of the biggest hurdles I had to get over was accepting the fact that my decades-long pursuit of wealth and fame through the internet was over.

Like many members of Generation X, I grew up with the internet. I evolved with it from email to local bulletin boards, to AOL, to IRC and beyond. I had a LiveJournal account with a pretty decent following (a few hundred followers at one point, which at a time when internet access was a luxury and computers were still prohibitively expensive for most was pretty great I thought). As online content became more of a “thing,” I also just assumed that since I was already generating such awesome and engaging content I would one day become a wildly successful content creator, rewarded with fame and financial security just for sharing my awesome opinions with the rest of the world.

I have been seriously disabused of that notion, mainly because I’ve seen firsthand the amount of work required to making a living by being an online content creator through several professional and personal relationships. Not to be too overly dramatic about it, but I’ve seen some things that will curl your toes my friends. Suffice it to say that for most of the people I know the amount of time, effort, and stress involved in just trying to make the equivalent of a 40-hour per week job with no benefits at minimum wage is so overwhelmingly huge that many of them have said that simply getting a job at the local Wal-Mart would be more financially rewarding. Many of these people loved what they did and the intangible benefits often outweighed the financial ones, but I learned a LONG time ago that I didn’t have the entrepreneurial spirit or fortitude required to make a real go of it. Especially because I had a family to support. People who relied on me for health insurance, food, lodging, etc… Much like acting, I had to put the desire to be a professional content creator on the back burner because of my responsibilities. I do not regret this at all. It’s simply a fact of being a parent and part of a familial unit. Over the last 30 years I have tried to make several goes at generating income through “side gigs” that included web development and content creation (blogs, videos, and podcasts), but none of them every amounted to much because I didn’t have what it took to stick them out. The most successful effort I was part of was getting some friends together to write a health and fitness blog for geeks, and the most that netted was a few paid posts for other sites, some pocket change in advertisements, and some nifty free swag (the best being Wii Fit controller and game). This was only after months of daily content created by our team (and predominantly two of us on “staff”), all of whom also had paying jobs and other commitments.

For the longest time I still held out the vain hope that someone would recognize my wit, charm, innate writing ability, and intellect and that I would gain instant overnight internet celebrity.

My Twitter account was the last vestige of that hope. Outside of this blog it was my most prolific public-facing internet presence, with fifteen years’ worth of my tweets. All of that amounted to a small handful of people even acknowledging when I announced I was shutting it down for real (including someone who trends dangerously close to being a stalker at times). My last few tweet storms were, in my opinion, some insightful commentaries on Elon Musk and Twitter, but instead of going out with a bang my final contribution to the bird site was nothing but a whimper.

It is entirely possible that I could have turned content creation into a full-time, well-paying job but I didn’t have what it took to make that happen. Most don’t. Like many careers, the apparent ease of making a living as a content creator (“I love playing video games! All I have to do is record myself playing them and people will throw money at me!”) hides a very grueling reality – Content creation is a grind, the odds of making a decent living at it are infinitesimally small, and one of the worst contributions that the internet has made to the world is the notion that “going viral” is a viable business plan.

I am not bitter about any of this. Honest. This is simply the reality that I had to accept, and in doing so I feel honestly liberated to go back to doing what I was back in my “glory days” on LiveJournal – Writing for a small group of people who engage with my content and vice versa. Doing this because I love doing it, not because I think it’s going to make me rich and/or famous.

Now watch this post go viral…

And then I was 50

I really did not have a master plan in mind when I sat down to write this post. Because it is me, I knew I wanted to write a post to mark my 50th birthday. I also felt that I should put an update out there around my cancer status. These two things are Big Deals in my life right now, so they got mashed together into what is going to be a very stream-of-consciousness type of post.

Let’s begin…

I will start with the health stuff. Last Wednesday I met with my new oncologist at Moffitt. For those of you who skim the headlines for the important details, all the testing I have had done since July has reaffirmed my original diagnosis. I have a well differentiated neuroendocrine tumor on the head of my pancreas. It is approximately 13cm by 11cm by 2cm. It has been growing for a very long time, has not metastasized, and is not posing an immediate threat to my life. In fact, if it had not been discovered during an unrelated ultrasound of my circulatory system, I still would not know it was there. This is not to say that it would not eventually become a health risk. These types of tumors release lots of hormones that cause other health issues (in my case it may be the cause of my Type II diabetes), and they can eventually grow to a point where they start interfering with the functions of the organs they are coming into contact with (also something I have run into, but I was unaware of why).

The meeting I had on Wednesday was primarily to determine how to go about getting my body ready for the surgery necessary to remove the tumor. There were two options on the table – radiation and chemotherapy. The goal of either option was to shrink the tumor so that there was less contact with the surrounding organs. Radiation would have been a more aggressive type of therapy, but (for reasons that I am not entirely clear on and ultimately do not matter) I am not a candidate for that type of therapy. My oncologist also does not feel it is necessary to put me through intense chemotherapy that would require a port to be installed and multiple visits to a medical facility. What I will be receiving instead is pill-based chemotherapy I can do at home that is minimally invasive with few major side effects. The tumor is made up of two different components. There is a hard, “solid” tumor that is surrounded by a larger, fluid-filled one. The chemotherapy should shrink the hard tumor, and a procedure will follow to aspirate and drain the fluid from the larger area. All of which is designed to make it easier to get the entirety of the mass removed surgically.

Which is all wonderful news. Unless you are me.

This type of therapy takes a long time to be effective. In setting my expectations for what I am facing, my doctor said it could be up to a year before we know if the treatments are making a difference. This is, honestly, not the answer I wanted.

I want this to be over, friends. I’m tired of being tired. Tired of worrying about how this is going to impact my life. Tired of every plan I make having a big asterisk on it that indicates “depending on how I feel at the time.” Tired of feeling like this whole situation is a huge burden on everyone around me. Just…tired.

I broke down and had a good cry over this whole thing on Saturday when I realized that I did not have the energy or will to deal with the stress surrounding going to an event I had been looking forward to for months. I am also looking ahead to the next year and realizing that I am going to have to plan the things I do even more carefully, and I am likely to be forced to continue my hiatus from acting as my therapy cycles are not going to be conducive to rehearsing.

The cry I had on Saturday was cathartic, though, and I knew that once the initial shock of what I heard on Wednesday wore off I would start to feel better about things. The news was GOOD news. My prospects are still wonderful. I have a long road ahead of me and it is not going to be easy, but I have no reason to think the outcome will be anything but positive.

Which leads me to my 50th birthday. Today.

While I was out for my walk this morning, I found a $1 bill on the ground of the park I go to. I am considering it a sign. I am putting it with my collectibles in my office and I am saving it until I am officially declared cancer-free. I realize I cannot really buy much for one dollar today, and I will likely be able to buy even less ten years from now, but that is my plan anyway.

I had a wonderful celebration yesterday with some of my family members and several friends who I have known since I was a teenager. I had some of my favorite foods. I received some lovely gifts and even lovelier cards with some sentiments in them that moved me to the core.

This morning I received a birthday present from my wife that absolutely blew me away beyond any expectations I may have had. It is so perfect I am not sure any gift I have ever received, or will receive in the future, will top it. Tonight, she is taking me to Ruth’s Chris Steak House for dinner. While we have had to scale back a few of the activities we planned for the rest of my birthday month, we still have a lot of exciting things to look forward to this weekend and beyond.

My life is fulfilling. I am happy. I am surrounded by good people who love me.

Everything else is noise.

I’m excited to see what the next fifty years bring.

[Frustration Hits YOU for 1000]

I put out to the universe that I wanted to do two things before I went into surgery to remove my Neuroendocrine Tumor. I wanted to be in Picasso at the Lapin Agile, and I wanted to go to Dragon Con with my son. The universe answered by giving me a double (or very extended) dose of COVID-19 that, combined with the fact that I had plans to go to Dragon Con that I was unwilling to cancel because of the fact that my son was going with me, resulted in the mutual decision to recast my role in the show. The icing on the cake is that my son was unable to join me (a fact I did not discover until I was already in Atlanta for the convention).

Needless to say the universe told me to go blow.

I had a fine time at the convention, and I do not regret going, but it cost me a lot. Maybe too much, but I’m trying to look at the bright side. I’m meeting with my surgeon at the Moffitt Cancer Center on September 26th, and when I do I won’t have to put off starting my treatments until after the show closes. Small comfort, but I’m taking what I can.

But speaking of bitter pills…figures that we’ve been able to avoid catching COVID for over two and a half years and caught it just in time for it to screw up my plans to do a show I really wanted to do. More than a bit mad about that one, too.

Anyway, not much else to report on the health front. While I’m over the coronavirus, it combined with my cancer to be a major drain on my energy. I’m only just now, weeks later, starting to feel like I’m back to some semblance of normal. I’ve been paying very close attention to the signs my body is giving me, resting when I need to, eating when I need to, and just being gentle with myself as not to do anything that could further hinder my ability to get the tumor removed.

Fun bonus content! I have a polyp in my colon that has high levels of dysplasia. What this means, in a very abbreviated way, is that it is pre-cancerous but needs to be removed. It is, as my doctor so delicately put it, “big and ugly.” So I’ve got more surgery to look forward to. I’m hoping it can be done while I’m in the hospital to have the NET removed.

Oh, just as an FYI to those who were members – I decided to take down the Caring Bridge site. I’ll still be posting information here, and when I go into surgery Lisa will be keeping my immediate family up-to-date on my status. With everything we have going on dealing with this it was just one more thing to keep track of and I needed to prioritize what was best for my mental well being in that regard. I’m pretty vicious about cutting out stressors in my life at the moment, and that was one I did not need.

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.

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.