Short version: I am in no immediate danger. Yay!
Long version: this gets a little complicated.
The follow-up was mostly good news. I am healing up nicely it seems, right on pace with what is expected. My activity restriction has officially been lifted, so I’m clear to start working out again which is nice. The stitches are still mostly intact which is a bit strange (they’re the dissolving kind), but nothing else appears to be out of the ordinary.
The margins on the removed chunk came back negative, which is a huge win. For those not familiar with the terminology, that means they couldn’t find evidence that we cut through any cancerous areas, meaning the likelihood of having left something behind has dropped significantly. Had it come back positive I’d be going in for a second surgery by the end of September, so not having that hanging over me is a big relief.
That said, I do have to have a hysterectomy. So that sort of sucks.
When they did the analysis of the chunk of tissue they removed, they found a second type of cancer cell. Without getting overly technical, I essentially had 1 that spreads faster but is easy to spot (this is what triggered everything), but I also had a second one (we’ll call it FBS because that is an acronym for how I feel about the situation) that is incredibly difficult to detect (and often gets missed) and is more likely to spread to other organs, but does so incredibly slowly. Usually FBS spawns the first type, which is really the only hope for catching that it exists.
The standard treatment when this type of cell is observed is hysterectomy. No individual tissue removal, no partial hysterectomy, straight up full on “take it all out” is the standard. The problem I have of course is that this also doesn’t usually show up until you’re in your 40’s so removing your baby-maker is a lot less likely to impact your life choices. When you’re 27 and just finally getting settled into life that decision has a little bit more weight to it, so my doctor is not exactly jumping to get that scheduled.
FBS is multifocal and glandular, which is why it’s so dangerous. It has no central point of origin, so it can pop up in multiple places at once, and it does so in deeper tissues (though at first it is strictly limited to a single organ, which is much better than multicentric). For example, they found 3 different growth centers for it in the small section they removed. Those could be the only 3, but it is far more likely that they are just part of a party taking place further up my insides. Since you can’t really detect it until it pisses off other cells enough to generate the first type of cell (and there’s no guarantee that will happen before I reach the point that the cancer is spreading to other organs; apparently the lungs are a popular vacation spot), the only real way to protect yourself is remove everything it could possibly be hiding in before it decides to pack its bags and check out other places to reside.
I have to go back for testing every 6 months for a few years, then go to every year testing until I either get a positive result or I decide my uterus has done its duty and the time comes to retire it. The super crappy thing about FBS is that a positive result is truly positive, but a negative result is not truly negative. All a negative result says is this really ominous “you’re safe…for now. See you in 6 months.” The moment I get a positive result, it means things are definitely progressing and it’s time for surgery round 2.
I guess the silver lining is that there is almost no scenario in which I will have to do radiation or chemo. Granted, it’s weird that there’s no option, but they are absolutely not options I would choose if the choice was presented to me. Surgery is a known quantity, and while it’s a crappy quantity, you know how to plan for it.
So, yeah. There we are. There’s nothing else that can be done by myself or any doctors until my next check in January (that’s technically 5 months, not 6, but my doc is going on a mission trip to Kenya for all of February and March), so I’m just trying to stick to the whole “why worry?” mentality I’ve been going with. I mean, I’m worried, but I’m not worried. The best way I can describe it is like driving a car: you know in the back of your head that at any given moment something could go wrong and you could crash and die with no warning, but you don’t actively worry about it every time you drive. It’s sort of a thought that’s in the absolute back of your mind, and maybe every once in a while you have a sudden realization you’re essentially in a giant death trap, then you just sort of go back to your daily life.
Since there won’t be anything new to report for a while, I’m hoping to maybe get back to posting about things that aren’t, you know, life altering. Thank you for all the well wishes and support friends 🙂
Hi guys! I’m not dead! Yay!
My insides sort of wish I was, but that’s another issue entirely…
The surgery seems to have gone well, on a technical level anyways. The doctor didn’t have anything abnormal to report and was able to successfully remove the piece we intended in one whole chunk (which is much better for testing purposes but incredibly hard to do). I was in surgery for a smidgen less than an hour. Thanks to the magic of medicine (and anesthesia that feels like general but somehow actually isn’t) I was in the car to head home about 40 minutes after being rolled out of the OR.
Minus a small freak out triggered once the IV went in (thank you massive irrational fear of needles), I did alright on a personal level. The nurse was super nice, and in an effort to help pull me back to more stable emotional state was super great about getting the IV port covered as much as possible so it didn’t continue to make me panic. Bonus: they were going to give me something to make me “not care” about what was going on about 10 minutes before going into the OR, sooo since I was starting to go “oh God there’s needles oh God I’m getting surgery fuck it’s cancer damn it damn it damn it” they sort of gave it to me early. So that helped!
Whatever it was they did with the anesthesia was crazy. I’m not usually a hold out as far as going under goes, but I have zero memory of the first few minutes before it was even administered. We got to the OR, they asked me to move to the table and make sure my butt was situated in this conveniently placed gap. I remember them saying “yeah right there is good” and then suddenly I was in the Phase 1 recovery area waving at the “nice nurse ladies”.
Waking up with an oxygen tube was super weird. I remember bits and pieces of the Phase 1 area. I asked if I could go to the bathroom, and the nurse asked me if I would like a bed pan. I said “if you think I need a bed pan instead of an actual bathroom I am willing to defer to your judgement and swallow my dignity”. She laughed and said “those are mighty fancy words for someone still on drugs.” I said “hey, I said from the start of this I was going to let this impact my life as little as possible, fancy words and all”. She cracked up and high-fived me, and then let me use an actual bathroom.
I’m stubborn, and was convinced I didn’t need the pain meds that were prescribed since the doc said some people end up not needing it and I’m convinced I’m a special snowflake and would be in that group. Turns out I was wrong. I sat up once and went “NOPE, THIS IS NOT GOING TO WORK”. Geoff was awesome and ran out to get that filled so I could not be quite so aware of my insides. Sneezing is less than pleasant, and I have to be careful how I sit up/lean, but overall things aren’t awful. Not good, but not awful. I’m on an activity restriction until my check-up (can’t lift anything more than 10 pounds, no working out), and apparently I can expect active bleeding for the ridiculous time period of 6 whole freaking weeks.
Check-up is in 3 weeks, and at that point I should get the margin results so we can form a plan for the future, one way or another. In the mean time, I’m going to try to take it easy and just try to resume life as normal. I have some painting projects lined up as a thank you to some people who have been extra supportive in the Rooster Teeth community, and I have another costume idea lined up that I’m working on getting planned out and started. We’ll see how things go I guess!
I had my first oncologist appointment Wednesday morning. I love my doctor. Turns out she’s one of the top gynecological oncologists in the nation, so that’s a massive win. She gave me a run down of how it is she views the results, which is actually a better prognosis than what the first doctor gave me. It still requires surgery, but she is pretty confident we can get it all out with a procedure that will have me home in a few hours and should have minimal impact on my ability to have children in the future. They’re going to take out one large chunk, but it’s in a more controlled manner so it shouldn’t cause any structural issues and will be easier to check for clear margins.
That said, we’re not playing around. We’ve set a date of August 8 for the surgery, and I’m the first case of the day. I go in at 6 AM, and I should be home by lunch. Drugged up, but home. I can’t work out or lift anything heavier than the dog for about 2 weeks, but other than that I can function as normal. At the 2 week mark I go back in for them to check on everything and get me the results of the margin check on the chunk they took out. If the margins come back clear, then we call it good and have a party. If the margins aren’t clear, then we’ll bump our attack up a notch. And if I get to have a party the entire internet is invited. No joke. Every single one of you can show up to my house.
My mom flew up here to see me for a few days because of all this craziness. It was a bit chaotic, but it was really nice to see her. Even with all the love and support I’ve gotten from friends and the Rooster Teeth community (and that is an entirely different story for another time), sometimes you just need a hug from your mom.
So, yeah, that’s kind of where everything is now. Still sucks, but sucks less than we expected, so that’s good. It’s all about silver linings!