Tag Archives: cancer

Not making it up

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It’s been a while since I’ve had the energy or motivation to post an update here. It’s not necessarily through a lack of desire, but whenever I think about doing so I’m usually away from my desk and when I’m at my desk these days I’m generally working.

Excuses, excuses. Not like I was filling this blog with tons of content in the first place.

I’ll start by copying and pasting an update I sent to my immediate family recently…

The tumor did not respond to chemotherapy. This was kind of expected, as the type of tumor I have (Islet Pancreatic Neuroendocrine Tumor, or PNET) tends to have very thick cell walls that the chemotherapy medication has a hard time penetrating, so this isn’t “bad” news. My doctors have concluded, however, that there isn’t much point in continuing down this path and we are moving on to the next step which, most likely, will be surgery.

The major complication to the already complicated surgery I’m having is that one of my blood vessels has been blocked (occluded) by the tumor. They are going to have to do a lot of work to correct that, and it may require them to take my entire pancreas along with my spleen instead of just removing the head of my pancreas (something known as a Whipple procedure). If that happens? I get promoted to Type 1 Diabetes and become insulin and enzyme dependent for the rest of my long, natural life.

I don’t have any dates yet, but the goal is to have me in there relatively soon. When it happens I’ll be in the hospital for at least seven days, and it will be six weeks or more before I return to work. Due to the protocols still in place since the Pandemic and other health factors I won’t be able to have any visitors while I’m in the hospital other than Lisa.

I’m not sure where I’d be in all this without Lisa, and not only from an emotional support standpoint. She’s been an absolute champion in terms of keeping me on track with my medications, handling all the different logistics of coordinating with multiple medical facilities, and generally making sure I can focus on just resting and saving my limited energy reserves for keeping up at work. When I get through to the other side of this, her involvement and support will have played a major role in my success. Hell, I wouldn’t even have known I had this if she hadn’t encouraged me to talk to my doctor about why my blood pressure and iron was so low every time I went to give blood. I mention all of this in particular because, right now, there’s nothing we really need or that anyone can do for us. Keep us in your thoughts, keep yourselves happy and healthy, and understand that if you don’t hear much more about this until after the fact it’s because things are moving fast and we need to focus on making sure we take care of everything that needs to happen to make it a success.

On the one hand, I’m thrilled to be off of chemotherapy, because chemotherapy sucks. I didn’t have it as bad as folks who have to go into a hospital setting five days a week, but I absolutely had side effects from the treatment that were really rough to live with. The worst was just the general lack of energy. I was tired all the time, regardless of how much sleep I got every night. I also lost my fingerprints at one point (a very odd but incredibly common side-effect of one of my chemo medications), had occasional bouts of chemo mouth (metal taste in my mouth that ended up making me decide to use nothing but plastic silverware), and all sorts of fun gastrointestinal issues. The fact that I won’t have to deal with that any more is thrilling and a cause for great rejoicing.

But then there is that whole surgery thing.

I’ve spent a lot of time feeling like I was being melodramatic about my cancer over the last year. That because it was “only” stage 1 and wasn’t in and of itself a particularly lethal type of cancer it was wrong for me to make such a big deal out of it. That’s really messed with my head as I’ve tried to navigate all the ways in which my life has changed since the diagnosis. Was I using my cancer as an excuse? Was I just trying to milk sympathy out of others that was undeserved? Was I being a cancer fraud?

Yep. Even when it comes to cancer I’ve got imposter syndrome.

Well, when we met with my surgeon last week all of those feelings went away. The scope of the procedure I’ll be undergoing is huge, and the recovery from it is going to be long. When it’s over, I’m going to have to learn how to navigate the world in a completely new way. Considering the size of the tumor, the fact that I have not developed liver cancer is, as described by my surgeon, “weird.” The occlusion of my blood vessel is a Really Big Deal which, thankfully, my body has corrected the best way that it can but that is not sustainable in the long term.

Reality hit me hard last week, and the speed with which this is all going to get very real is intimidating.

On top of all that I’ve been dealing with some other very personal stuff that I won’t go into detail about publicly but that has had a tremendous toll on my mental health on top of everything else. So much so that, combined with the cancer shit, my therapist and I decided I should go back on Wellbutrin for a while. I haven’t been on anti-depressants since I got divorced back in 2000.

I got sick (again) this last weekend and it took a day or two for me to fully recover. For the first time since my diagnosis, I really felt like I had something wrong with me.  That I was ill. Prior to that I was putting it all on the chemotherapy, but that’s out of my system now. I’m not well, and it’s not all in my head, and it’s a Big Fucking Deal. The fact that it is “little c” cancer doesn’t change the fact that I have a giant tumor in my abdomen that needs to come out and that the procedure to do so is incredibly invasive and will have life-changing effects on me. The fact that it is “little c” cancer doesn’t make the impact to my health any less significant.

I’m not making this out to be more than it is in my head. If anything, I have not fully respected the magnitude of what I’m facing.

I meant what I wrote about Lisa. She’s been amazing, and so very patient with me. She’s turned her life upside down to make sure I have the best possible outcome in this scenario. I’ve also been lucky to have great insurance, wonderful doctors, and the means to pay for them. I’ve also got a great support network of friends who have been understanding of our inability to commit to plans and our need to frequently change them when we do.

It will be ok in the end. I believe that.

But things really are kind of hard and scary at the moment.

And that isn’t all in my head.

And then I was 50

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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]

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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.

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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.

Over saturation

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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”

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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.

Well. OK then.

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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…

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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.