A little 2024 update.
Well, here we are in a new year. I’m trying to do all the reflecting and planning and stuff. Mostly planning. Let me be really honest with you, 2023 was not great for me. It was a year full of anxiety and medical shit for the most part. Let me do a quick little review on everything so we all know where we are in the story.
It’s 2:30? More like tooth-hurty.
I have this nagging hurt in my tooth on the left side of my mouth on the top. I assume it’s because I eat a lot of candy. I have had cavities and fillings and crowns and root canals and honestly I lost count of the amounts and locations. But I will say I have a fair amount of guilt and shame over the fact that I believe a great amount of my dental issues have been caused by sour patch kids and albanese gummies and things like that.
My stupid dentist at the time was like… we can put a crown on it, I don’t know if it’s going to make the pain go away, but it might. My insurance at the time of course did NOT cover this procedure. So we go ahead and have the stupid crown put on, it does NOTHING for the pain, and now I owe the dentist like $900 or something. So now, my teeth are still hurting, and I make an appointment to go in, and now they won’t see me… because of the outstanding balance. Urgh. Fucking jerks. OK, fine. I get the balance paid, and go in and try again. The dentist is just like… I do not think this is a dental issue, you might want to try an ENT. Months were passing. But it’s not like there was a tumor growing or anything.
I Found Her. The Worst ENT Doctor in Minnesota
OK first off, I should say that’s probably unfair. I had a terrible experience with this woman but maybe she is a really good doctor. I fucking doubt it but whatever. So at this appointment they tell me they think there is “something” and it’s “in there” meaning in my sinus… I guess. They are very certain it’s nothing bad, but we should check it out because it might be what’s causing the pain. So they do a really painful procedure where they stick a bunch of tube up my nose and then try to get whatever it was out of there. They did a biopsy and it was inconclusive. OK… so really making quite a bit of effort here to find out absolutely nothing and getting really frustrated. Also the amount of shit they can cram into your sinus is literally unbelievable. Like it had sort of an opposite clowns getting out of the car vibe. Anyways.
OK Now I’m off to a Dental Surgeon
The ENT lady has now referred me over to this dental surgeon guy who is going to cut out more stuff because the biopsy on the previous material was inconclusive. This guy is explaining to me how he’s going to cut along the gumline and then peel the gums down, and then try to get a sample from behind / in the roots of the tooth. I’m literally cringing at the description but, I guess if that’s what we need to do let’s do it. So I ask “when?” and he’s like…. “Uh.. what are you doing right now?”. OK great. Casual Friday afternoon to getting your gums cut open pipeline.
Confidence of a Mediocre White Male
He gets the sample and is like… “listen, I’m 99% sure this is NOT cancer. You go and have a good weekend and we will get you the results next week”. If you are guessing that he had the confidence of a mediocre white male, you are correct. Men who are surgeons are… well, I struggle to find the right adjective… One person in my cancer group accurately summed it up:
“If you took all the people who work in a medical setting and compared them to a high school, the surgeons would be like… The Jocks"
OK. Queue Tom Petty because the wait is the hardest part. No honestly I was really not thinking about it that much. I knew I was going to get a phone call next week, I felt somewhat certain (??) nothing was wrong… or if there WAS something wrong it wouldn’t be a huge deal. Well, phone finally rings and my immediate thought was that it was sort of weird that the ENT and not the Dental Surgeon called me back, but whatever.
What I didn’t realize yet was that I was a hot potato being passed around. Someone had to give me bad news and no one really wanted to do it. Especially since both of these fucking hacks already told me they were quite sure I was going to be just fine. I think it’s hilarious that the guy who confidently said the 99% thing didn’t have the balls to call me back. I mean…. “Hilarious” because what choice do we have but to laugh at that sort of hubris and embarrassingly misguided confidence.
The Phone Call
Well, apparently when you have to call someone and tell them that they have cancer you wait until the end of the day… She was literally driving home. Like I could hear the wind through the windows of the car. She explained to me that the sample was positive for cancer, and that they thought it was one of two kinds… either the one that is caused by HPV, or some other really rare and bad one.
OK, great. I was trying to get as much info as I could, but was super overwhelmed. Fairly quickly I realized she was trying to cut the conversation off. This was crystal clear when I heard the little “beep — beep —- beep” thing of her car (apparently backing into the garage). So she was home now and it was time for the call to end. I had cancer and an appointment like 17 days out or something. It (the wait… and the weight) was brutal.
Brain Provides Lots of Bad and Scary InformationThe problem with being diagnosed with cancer and then waiting to talk to anyone is that you rely on tropes and shit from TV & movies. You are fully expecting to go in there and have them be like… well, it’s a very aggressive form of cancer and we just can’t operate because the mendula banana unicycle is too close to the garage griddle flapjacks. It’s stage four and you have like 20 minutes to live. Make sure to remember to get your parking validated.
OK maybe they didn’t say banana but that’s more or less what it sounds like. They’re just gonna say some words at you that you do not understand despite VERY much wanting to, and it’s gonna be scary as fuck.
You really just hope that you have a fighting chance. Your brain is NOT your friend in this stage… it’s amazing how convinced you can become that you have cancer like from your pinky toe to your eyebrows and everywhere else in between. Every cough, knuckle crack, eye booger… I mean god forbid you thought there was a lump somewhere. Every single thing that gets your attention becomes a trigger. Your OWN body becomes your enemy and it’s really hard to understand how to “fight” that. The whole world becomes feels terrifying because everything segues into cancer. Money, food, friends, work, family, my kids. Fuck. Telling my kids. I still struggle so much to talk about it around my kids to this day. I don’t want them to know I’m scared.
Wow It Just Keeps Getting WorseCancer is so fucking scary that you can think about how scary it is for HOURS and then still be hitting on new content. Like I worried about so many things…and then it occurred to me: “this is not going to make my financial responsibilities go away”… like… I still need to earn money and well, I suppose I’ll have some hospital bills to worry about as well. You try to not worry about all of the stuff that’s still months out. But it’s really difficult. Your brain just runs wild and to be honest, NONE of it is good. It’s a minefield but that actually understates it because in a minefield there are presumably places that you can move that do NOT explode. The whole… mental processing of cancer feels like it’s just all a fucking explosive mine and there isn’t a single step you can take in any direction that will not result in another explosion.
Big Day at the HospitalSo, I finally wait out my little sentence and I go and meet with the ENT / Surgeon guy. He had very little to say, mostly just that we were going to cut out the tumors, and then likely do radiation and then maybe chemo. It was all very overwhelming. I didn’t even know what questions I had. My mind would oscillate between thinking about something too embarrassing to ask, like “what am I gonna look like?” and then seconds later you’re thinking like… “am I going to die?” I was wondering if the cancer was still spreading. Or if there was more maybe we didn’t find. I realized pretty quickly that the mental support is almost non-existent and you need to figure that part out on your own.
Super Fast ForwardOK the point of this post was supposed to be a “quick update” and I’m really getting in the weeds over the whole back-story. So we’re going to whip through this part. I did the surgery, they took out a huge part of my mouth and a tumor that was the size of a ping pong ball. Mouth pain is thorough. It affects your eating and drinking and speech and swallowing and breathing and damn near everything else. Chemo was not as bad as I thought. Radiation was fucking brutal. More on that some other time maybe.
Hey You Did It. You’re Cured.
So, again I’m skipping over a LOT here (a few additional surgeries, some more biopsies and scary weekends and scans and on and on… but no more cancer… YET)….. (that’s foreshadowing)
So now let’s fast forward to Spring of 2023. I’m not doing that great mentally because I feel like something is still really wrong. I have been to speech therapists and spent almost 100 hours in a dentist chair having this mouthpiece built that was supposed to help my speech. That’s… again, an issue for another day. I will say that the mouthpiece was very little help. The amount of time, effort, pain and discomfort I had to put up with getting the fucking thing made FAR outweighed any benefit it provided me.
It basically took this span of time where I COULD have been NOT up to my ears in medical appointments and instead I dove right back in. Trying to get this fixed… I need to be confident on the phone for my work. Even looking back, I think it was important to try. The mouthpiece thing did NOT work out, but I think that just having a “fuck it it’s not gonna work” attitude …. it’s just not a good choice.
Cancer with a High Recurrence RateSo for the record, I have a type of cancer called Adenoid Cystic Carcinoma. That means it started in the sinus area (adenoid). When they told me the type of cancer I had, the first thing he said was “do NOT google it”. Which, I understand why now. If you want to do it you’ll see a lot of things that basically say “you’re going to die within 5 years”. ACC (Adenoid Cystic Carcinoma) is one of the cancers that just figures out a way to keep on coming back. Obviously that’s really scary, because it sort of means you’re like… never really in the clear. I try to not do all the doom scrolling that comes with cancer and google, but I also wanted to arm myself with SOME type of information. I kept on seeing that recurrence often happens in the lungs. That was sort of worrisome to me because the scans we had done had all been “local” meaning where the cancer was originally detected / removed / treated.
Please Take a Look
I brought my oncologist a website that I was hoping would make a difference. It basically showed that the guidelines for when (and where) we SHOULD be doing scans were a lot more frequent than what we had been doing. Now please understand… my oncologist WAS doing her job. She is a good doctor. She is also responsible for managing your care in a way that will… well, get paid by the insurance. She can’t just DECIDE to run a $12,000 scan…. If she does, and it’s determined that was not needed, then I am footing that $12,000 bill. All that shit aside, she was able to get approval for the scans. So that was good. I really just wanted to feel completely sure that (at least for now) I had a clean bill of health and that the cancer was at bay… or undetectable… or whatever. They don’t say “cured” anymore.
Anxiety around Scans
So if you’re on facebook groups or whatever for cancer you’ll hear people talk about their anxiety around scans. They call it “scanxiety” sometimes. I was getting to the point where they didn’t really make me as nervous anymore, mostly just because I had a string of good results. The little machine you lay in is small. So I usually take an anti-anxiety pill and smoke a lot of weed beforehand and just try to sleep or think of things that are calming. I have never opened my eyes inside of an MRI machine because I think it’s better to just not even know how small they are.
Anyhow, I am usually pretty calm for scans. This one was no different. You get led around some hallways by nurses and you lay still or whatever. It’s pretty simple and easy. These scans were really no different. But unfortunately the results were a lot more upsetting this time around.
Cancer came Back
So that would have been… like May or June? Of 2023. But yeah, my cancer came back and it is in my lungs. So that means it metastasized. When it shows up in another location, that’s considered metastasis, which is stage 4. That means like… you’re in trouble. I have a tumor in my lungs that isn’t huge, but it’s still scary. Then there were also some “nodes” that were of varying sizes… They thought chemo was the best way to deal with it.
So I did a few appointments with a nurse and my oncologist, but more or less the plan was to mail me the treatment pills, and then monitor as needed. That seemed weird, but like… OK. If it’s just a pill, I will go home and take the pill. So they come in the mail, and I take them. I don’t know. It all felt very weird. Like… is this going to work?
I came in for the check-ins and was just an emotional mess. I cry at like… most of my appointments. It’s pretty embarrassing to be honest. But then again, when you’re talking about these huge overwhelming and scary things, it makes a lot of sense to be emotional about it.
One of the nurses was like… “we are just going to really try to wrap our arms around you and help you through this” and I started meeting with nurses and was assigned a social worker that I see every two weeks. That helps. You really do NOT want to feel out of touch. I think part of it was that when I went through radiation treatment, that requires SO much monitoring and contacts and you’re in the hospital literally EVERY day. Now all the sudden I’m just out here fighting cancer by mail? It felt very alone and scary and generally fucked up.
This is Making me Feel UncomfortableSo, I’m getting my ass kicked by this treatment that I’m not sure is working. I’m stage 4, and there is no stage 5, so like… I’m dying? I really don’t know what is happening. I join this group at Gilda’s club (which has been a really wonderful thing) and they are all like “get a second opinion” so (I’m going to super fast forward through a boring story about insurance here) now I’m at Mayo. My first trip was last week, on Thursday, January for a blood test. Then I was there VERY early Friday morning for a scan, and now I have one more scan tomorrow (Monday) and then I will meet with my oncologist. She specializes in head and neck and has been published for a handful of things that I think are very relevant to my situation. So that feels a lot better. I’m excited.
Lenvima is a Cancer Drug…
One day maybe I’ll have the end of that sentence. It’s so weird. I was on this 24mg dose of Lenvima and it was very much kicking my ass. I was sleeping 14 and 16 hours sometimes. I was in pain ALL the time. I was taking more and more oxy to deal with that. I could barely open my mouth.
Everything was overwhelmingly spicy. I thought I would have to get a feeding tube again. The worst part of it, is that we really do not know if it even works. ACC is typically not responsible to chemotherapy treatments. But there have been some studies showing lenvima will slow growth or whatever. Taking 24mg was way too much and killing me. Now I’m on 14 and it’s a lot more manageable.
So Now I’m at Mayo…
Timeline gets weird here because now I’m finally finishing writing this post and I’ve been to Mayo serveral times now. My first trip was Thursday, January 3rd for a blood test. Then I was there VERY early Friday morning for a scan, and had one more scan tomorrow (Monday, Jan 8th) and then I meet with my oncologist. She specializes in head and neck and has been published for a handful of things that I think are very relevant to my situation. So that feels a lot better. I’m excited.