“23” and Me

When I was first diagnosed with my cancer, I wasn’t diagnosed officially. I was told that there was a “spot” on my liver, which Tillamook hospital labeled as 2-3 centimeters. For those in Imperial Measurement Land, that’s about 3/4” - 1 1/8”. I think that can be accurately called a “spot.” Of course just having anything growing on an internal organ isn’t particularly awesome. It’s scary. Jessica and I worked very hard to convince the medical industrial complex and my home doctor that I needed a biopsy to determine what was actually going on. A “spot” could be a benign cyst that wasn’t cancerous, but rather something else. That’s what we were hoping for. But hopes and reality are oftentimes not in alignment with each other. 

Eventually I was able to get my biopsy and the more definitive news that punctuation matters. It turns out that a medical error had been made, and the measurement of my tumor (which indeed turned out to be cancerous, <boo, hiss>) was instead 23 cm. Again, I will translate that into Imperial measurements. That’s about nine inches. 

I learned this in the darkened biopsy room where I was by myself, with two medical professionals near me. They clearly weren’t informed that I was unaware of the actual size of the tumor. Not just large, but massive. I’m going to tell you that crying in a darkened room while being stuck with a probe like a Costco worker checking the internal temperature of a rotisserie chicken is not ideal. 

But at least I knew, right? Derp-derp-derp. 🤪

The time between my warning diagnosis and actual treatment was intolerably full of mystery and misery. Would ANY treatment work? Would I quit losing weight? Would I ever feel like I had energy again, and not sleep 10 hours a day while I was slowly dying? 

Fortunately, the answer to all of those became, 1. Yes 2 Yes, 3 Mostly, and 4 yes. 

As you know, immunotherapy worked well, too well, and I developed an immune-response type of hepatitis. Gross. But not a blood borne version, so I was a good boy. And 2 treatments worked incredibly well. 

Come New Years, the tumor was no longer 23, but more like 10-11, which is more like 4”. And with radiation, it may end up to be zero. Numbers are ruling my life right now. Money is represented by a number, which is reflected in how much I have in the bank, not being able to work. Amount of cancer markers in my blood is another measurement. The number of days that it will be until I can go back to work next year. Numbers that are either uncertain, or fixed. 

Which brings me to the commercial genetic testing company 23andMe. I’ve always thought that it would be kind of cool to do genetic testing. Where am I from? Do I really have, as my dad said to explain why my beard and rest of head hair didn’t connect, a little bit of “Hun” in me? What kind of diseases am I predisposed to be at risk for? I’m sure that if I did the test and liver cancer didn’t come up as a predisposition, I might be more than a little pissed off. Or not. Who knows…

Regardless, it seems that 23andMe is in some serious trouble. 

They are in the process of selling off their database of user data. Which is, of course, scary AF, I don’t know of the morality of that, but it’s happening anyway. (As an aside, that is something I’ve been seeing a lot lately. “Is that LEGAL? Well, it’s happening anyway…” <sigh>) Anyway, genetic data has always been a tricky thing. 

Maybe it’s good that I didn’t do the test, because I still have the ability to be a master criminal <bwahahahahaha!!!> because my DNA isn’t “in the system.” Or it can’t be sold to some other company who might use it for nefarious purposes. 

Sometime after I was diagnosed, but before I started immunotherapy, I was able to give completely unadulterated Cancer Boy™ blood to a study that was being done to determine whether they could create a simple blood test which could be an early diagnosis of my particular type of cancer. Maybe when the tumor was smaller, 2-3, rather than 23 or some other obscene number. I’m very much a proponent of science. So much, in fact, that if I lose this “fight,” and the cancer gets me, I want every piece that can be donated to research so that I can help other people. I honestly think that over a long enough time period, science is going to solve most problems that we throw at it, so long as we have the will and the money. Sadly, we are in an ebb time with regards to the respect of science and scientists. It’s likely that money will be drying up for a lot of programs like the one that could be an earlier cancer diagnostic that I explained earlier. 

I’m hopeful that the anti-science, anti-expert fever will break at some point, but I don’t see a path for it any time soon. The fragmentation of information and (systematic?) disruption of gatekeepers to block bunk ideas is particularly worrisome and makes me feel unsure about our future. I feel that we’re only a couple steps away from bleeding patients again to balance their humors, while being distrustful of modern medicine. 

Modern medicine has, thus far, saved my life. I’ve made the comment, and Jessica hates it when I put it this way, that I would likely be in the ground right now if my cancer had happened a couple of decades ago. 

My “traveler,” or “Susan,” or “23” as I have more recently called it, but only in my head, was in me, and a part of me. I’m hoping that it will be apart from me, and I’m working on it. So much as I can do anything, besides put my hopes and faith behind the doctors and scientists who are doing such a competent job while not treating me like I’m a dead man walking. 

Hope is not stupid. It helps. And hope drives humans to find out how to solve problems. To fix the previously unfixable. Just so long as the will exists. And that’s the harder problem. We have the resources, but do we have the will? 

I guess I just have to have hope, right?