My Wacky Cancer Adventure!
And I can finally mention how Airbnb screwed me over which I couldn't bring up before without mentioning the cancer
So I got cancer. I actually found this out back in July of last year, and I was going to tell you guys all about it as soon as I knew exactly what kind of cancer I had and what was going on.
Well, it’s like half a year later, and I had surgery in December to remove two tumors, and I still don’t really know what’s going on. So I’m going to tell you what I know.
Frank Talk is a reader-supported publication. To receive new posts and support my work, consider becoming a free or paid subscriber.
So, it’s July, and I’m about to go on a two-week road trip with my family to the Grand Canyon and Mount Rushmore (which I’ve never seen). I got a new notebook where I was going to take notes of the kids’ reactions to stuff because my day job is now to write for homeschooling chinchillas, so I could treat this vacation as research (and maybe do a tax write-off (I’ve learned now that I’m in the media, you can write off all sorts of things since any time I consume any media it’s research).
But the week before the trip, I went to the doctor. You see, I decided to finally be responsible. Two years earlier, I had my gallbladder out because of gallstones. In that process, they spotted a liver cyst, and I was told I should eventually follow up on that. So, two years later, I finally did, and I got sent to do a CT scan. Then, the day before we leave for our trip, I got a call from the nurse that the doctor wanted to see me right away to talk about the results.
I schedule to see the doctor in a couple of hours and then just kind of stew, wondering what that’s about. But now they have those portals where you can log in and see test results. So I pulled up the CT scan results, and it’s got words like “hypervascular lesion” and “metastatic disease suspected.” I’m no doctor, but these are scary words!
Oh, but the liver cyst was gone.
I got to the doctor, and he told me it looked like I had two different tumors, one in my pelvis and one on my liver in the gallbladder fossa (the groove in my liver where the gallbladder used to be). So, the suspicion is I have some sort of metastatic cancer. The weird thing, though, is that the liver and pelvis are kind of far apart, and there was no indication of tumors anywhere in between. Still, the doctor seemed to want to prepare for the worst, but he assured me being relatively young (44) and a healthy weight, I should be a good candidate for radiation, surgery, or chemotherapy based on whatever is needed (still, all things being even, I’d rather wait to have cancer when I’m really, really old). He was also very definitive that I needed to cancel my trip and get a biopsy right away.
Well, this was quite a gear shift. I was all ready for a long vacation, and now my whole life has changed as I’m waiting to find out if I’m dealing with a possibly rapidly spreading cancer. I had never really seriously considered my death before. I mean, I hadn’t ignored the possibility. I had life insurance (and I was in the process of applying for more — though that’s all blown to hell now). I had also recently gotten a will as my wife and I, with a special needs kid, wanted to make sure everything was taken care of in case something happened to both of us. But I hadn’t really considered the real possibility of dying — where when we’re talking future plans, I realize my being around isn’t guaranteed.
I’m a Christian. I’d like to think I’m ready for death whenever it comes and can just be grateful for what I had in life, but it’s hard when you’re leaving a family behind. It’s a lot to rest on my wife’s shoulders, and it would certainly be tough on the kids. With my three older kids, I felt at least they’d walk away with the memories of me, and I’d be a positive influence in their life… but not with little Winchester. There was nothing I could do for him other than stick around.
Anyway, a lot of heavy thoughts on me and my wife (the kids I don’t feel ever understood the gravity of what was going on, but that’s fine) as we canceled our trip. Sarah had planned out the trip and pre-booked some hotels and an Airbnb just 24 hours earlier. The hotels refunded, but apparently, Airbnb only refunds in very special circumstances, and a doctor telling you to cancel your trip because you probably have cancer is not one of those. They said we could ask who owned the place for a refund, but she was like, “No, I’d rather keep your $1050.” Oh. Okay. Could have used that for doctor bills, but yeah, you take it. We did get the cleaning fee back, though.
Anyway, last time we use Airbnb.
That was upsetting; luckily, I had worrying about cancer to distract me from that. We were able to get a biopsy the next week. They gave me that fentanyl everyone is talking about, and I didn’t go fully to sleep, for it just made me really sleepy. That seemed to go well as they got a piece of the tumor in my pelvis, and now it was just time to wait for pathology to find out what we were dealing with.
So, just a couple of days later, I got a call from my doctor, and I remember him taking a long time to get to the point when all I wanted to know was whether I was dying soon or not. He said preliminary pathology said it was a germ cell tumor, and he was referring me to an oncologist. Germ cell tumor didn’t sound too bad, but then I looked it up, and I was in the wrong age range for it. When I got to my oncologist, he said it was actually more likely a neuroendocrine tumor, but the pathologist was really confused by it and sent the sample to the Mayo Clinic for a second opinion. The headline, though, was that it was a low-grade cancer, so we could pump the brakes as I wasn’t at risk any time soon (and things did slow down at this point; everything after this there is weeks in between). Also, the oncologist was pretty convinced we didn’t need to worry about the lesion on the liver as he thought that was most likely scar tissue from when I had my gallbladder removed as it really doesn’t make sense a low-grade cancer would spread that far (especially with us not seeing anything affected in between). But it looked like what was ahead of me was surgery, and hopefully, that would be it. So that’s what I was looking forward to: surgery, and then maybe be done with this.
So now it was time for some more tests, including a blood test (everything normal) and a special PET scan for neuroendocrine tumors. Incidentially, the lady who I talked to to book the PET scan was the first person in all this to actually use the word “cancer,” casually asking me, “And you have a cancer?” To which I answered yes, as I looked up neuroendocrine tumors and that is a cancer. Throughout all this, there were ;ots of uses of words like “lesions” and “tumors,” but most doctors seem hesitant to actually use the c-word.
Anyway, the PET scan lit up in the same places as the CT scan, so no new information. Now, my oncologist has a theory that the tumor in the pelvis probably has an origin in my colon (the tumor didn’t seem like it could be its own origin), so he refers me to a colon rectal surgeon who sets me up for a colonoscopy. The prep for that is not fun. You drink something that feels like Gatorade that wasn’t watered down, and then you sit on the can until your guts are empty — and for a little bit longer. It’s like dry heaves… but out the other end. For the colonoscopy, I was put fully under with an IV in the back of my hand (incidentally, the most painful thing in all of this was the shot they gave me to numb my hand so I wouldn’t feel them putting in the IV). I wake up and am told by the surgeon that a few polyps were found, but nothing cancerous. Normally, that would be good news after a colonoscopy, but for me, it meant we still had no idea where the tumor in my pelvis came from.
Despite not knowing where the tumor in the pelvis came from, I started to make plans with the colon-rectal surgeon to remove it (using something called a Da Vinci robot, which looks something like Doctor Octopus’s harness). And my oncologist decided to finally follow up on the unknown lesion on my gallbladder fossa and get an MRI of it. Well, we get the MRI, but it doesn’t allow us to dismiss it as scar tissue from the previous surgery. And now the colon-rectal surgeon says he got back from the tumor panel where a bunch of doctors met to decide what to do with me, and they determined that the tumor in my pelvis has nothing to do with the colon and instead is on my seminal vesicles, thus now I get referred to a urologist. Plus, the Mayo Clinic finally got back on the pathology, and they were completely stumped, calling the tumor an “unknown epithelioid tumor.” At this point, my oncologist tells me I’m his toughest case in several years. Fun. But since all tests still show it’s a low-grade cancer, this is kind of like this was a low-stakes episode of House.
So, the urologist tells me that a tumor on the seminal vesicles is extremely rare (he’s only dealt with two in his twenty years), but, whatever, they’ll cut it out. So we make plans for surgery. Then I get a call they’re deciding to add a second surgeon, one to go ahead and take a look at whatever is that lesion on my liver at the same time. They’ll be using a Da Vinci, too (but I guess a one-arm one) and just get the tumor in the pelvis and then turn it around and look at my liver. This new surgeon has a theory about an origin on my small bowel. So he’s also going to look there for tumors, and if he finds them, he could just go ahead and do a resection (a big scary procedure that would have me in the hospital for days while before we were initially looking at outpatient surgery).
This was fun. Thanks to having to schedule two surgeons together, I had more than a month to contemplate the unknown. Basically, I’d be going under and having no idea what I’d wake up to based on what they found examining my liver and intestine. And despite what we knew about the one tumor being low-grade, I just had this feeling another shoe was going to drop when they finally got in there and examined things. And I was getting a little tired of the extra attention from my tumors, with people always asking how I was feeling when this so far had been a completely theoretical illness (the tumor(s) had been incidentally discovered and so far never affected me in any way).
Surgery — the thing I’d knew was coming since July — finally arrives on December 18th. My last memory before the surgery was them saying they were giving me a shot for the road (fentanyl again). And then I wake up in pain and really feeling like I need to pee. The nurse gives me a shot for that (I guess so I don’t feel like I need to pee anymore) and then I pepper her with questions because I have no idea what happened. Well, my small bowel had not had a resection (which was good), but two tumors had been removed from me (a little less good because I still really hoped the other thing was scar tissue because two related tumors are bad and deserves a word like “metastatic”). And I had been in surgery for four hours, which is weird because they estimated an hour unless I needed the small bowel resection.
The nurse gets me on the phone with my wife because of all my questions, and it ends up the tumor in my pelvis was not connected to my seminal vesicles. In fact, it was not connected to anything. It was just floating loose in the fatty tissue. The surgeon says he had never seen anything like that before (fun!). The other tumor was very loosely connected to the gallbladder fossa in my liver, and they basically just plucked it out. So I’m guessing the reason I was in surgery so long was the whole thing made no sense, and they really wanted to find an origin.
A big part of my Christmas vacation was doctor’s follow-ups. The oncologist was very positive, thinking I’m disease-free now, but we’re still waiting on pathology to find out exactly what those tumors were (this time, the samples have been sent to Johns Hopkins). The surgical oncologist who worked on my liver was less positive, saying there has to be another origin in me. Maybe my body had destroyed it on its own, but he seemed to think this could pop up again — though maybe not for five to ten years.
So here we are now. I’m still waiting for John’s Hopkins to maybe solve things, but that could be weeks away. And I’m still in some pain and just generally uncomfortable recovering from surgery with five cuts in my belly healing. Also, I’m not supposed to pick up anything heavier than 20 pounds for a few weeks more — which means I can’t pick up Winchester (who still is not great at listening). So, I feel like a useless lump.
But, on the very big plus side, I think I’m most likely going to be around to see my kids grow up. And that’s not something I appreciated as much before now.
Oh, and I should note this whole thing hasn’t been a terrible financial blow for us as, through the Daily Wire, I have the best health insurance I’ve had since before Obamacare.
Though I’m still really pissed about that $1000+ Airbnb took from us.
Well, that was long and rambling. How are you doing?
UPDATE: Further news (including the name of the tumors) here.
Frank Talk is a reader-supported publication. To receive new posts and support my work, consider becoming a free or paid subscriber.