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.