Archive for August, 2016

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Wrapping this up

August 31, 2016

So I’m going in tomorrow morning for the gruesomely titled “Neck dissection surgery,” which I understand a bit better now. As the doctor explained it, tumors can leech out trace amounts of cancer cells that get caught in your lymph nodes. Based on the size of the tumor I had removed, it’s more likely than not that this has happened in my body.

That’s fine, as long as you remove those lymph nodes before they overflow/erupt. So, that’s what tomorrow’s surgery is, hopefully the final stage in our long national nightmare. It’s scheduled at 10:15 AM (just got the word), so I’ll be able to drop Dylan off for his first day of kindergarten (yay!) and head over to the hospital after.

There’s a small chance that once they remove the lymph nodes they find that one of them had burst, in which case, bad news & radiation or some other aggressive shit is in my future. But like I said earlier, based on the fact that the PET/CT scan didn’t show anything like that, and none of my lymph nodes feel swollen or anything, this seems highly unlikely. I’ll know for sure 7-10 days from now when they’re done examining the excised tissue.

And then I just have to heal, which will take a few more weeks. Allegedly I’ll be back to normal or very near normal in terms of ability to eat and drink and enjoy life.

Most people with throat cancers don’t find out in time, I guess I was just lucky. it’s an incredibly survivable cancer, slow moving, non-aggressive, but it has an overall 45% mortality rate ’cause most people find out very late in the game. Hell, even in my case it was very near a stage 3 in terms of size.

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Fairness

August 30, 2016

When my good friend survived a very serious diagnosis of colon cancer, I asked him if they cut out enough of his colon that if I sodomized him I’d be able to see my penis distending his belly with every thrust. I told him that that was all I’d ever wanted, to pretend like I was fucking John Hurt in Alien right before the Alien pops out of his stomach and that my penis was the baby Alien.

So, when people ask “wow, you’re so young to get cancer, and you didn’t smoke or anything, do you feel like it’s unfair?” I think, “no. This seems about right.”

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Mortality

August 29, 2016

So, I have cancer, or maybe I had it, and it’s been removed, and it looks like I’m gonna live. But, maybe 100 years ago, I wouldn’t have. When Robin gave birth to Emerson, she was too big to come out via the traditional exit, and surgery was required. Robin lived & Emerson lived. Not sure how long ago in the past that wouldn’t have been the case. Three different friends had absurdly touch & go pregnancies all involving a combination of bed-rest, drugs & life-saving ventures to protect the preemies. Everyone lived. All the moms, all the kids.

I can’t imagine what life was like only a couple short centuries ago where an average 44 year old would be surrounded by so much death. That childbirth was often a death sentence for the child or the mother or both, and that minor shit would just sweep in and kill you. No one I know in my age range has died. A few have miscarried, although not terribly far down the path. No one has died of cancer or car accidents or gunplay or anything. I wonder also what it’s gonna be like for Emerson’s grandkids 100 years from now. Will people even still die or will their bodies just wear out piece by piece? Will people choose to die if the option is some horrible run of surgeries to replace multiple parts inside them?

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Updates

August 27, 2016

So, the straw panic emergency turned out fine, I re-threaded the entire 25 cm of tube down into my stomach without taking a bypass into my lungs or some crazy shit. I went to the Urgent Care expecting them to do an X-ray or something to verify position, but it turns out they’re way smarter than I am. They just held a stethoscope to my stomach and pumped a tiny qty of air through the tube and listened to it come out. Apparently it was just fine.

So, I feed myself 4 x a day, each time being 500ML of this horrible gruel called Replete, which is scientifically formulated to be all the everything you need. Enough nutrition, enough hydration, enough energy, enough vitamins, enough calories, enough carbs, etc etc etc. The thing about it is, 1) it’s nice ’cause it doesn’t force me to re-use my surgically destroyed throat muscles, but 2) it’s nice ’cause I don’t have to think about anything. It’s exactly enough and I just have it at the prescribed times and that’s that.

But today I skipped two of the meals. Starting this Thursday when the tube comes out, I’ll skip all of them, but for practice, this morning (Saturday), I just drank a TON of water and ate a decadent creme brulee style dessert thing. It was a little TOO much cream/milk/eggs/spices, and I’m pretty sure I ate enough for three people. But at the same time I wanted to make sure I was getting enough energy to replace the Replete. It’s confusing. Then for dinner I skipped the replete again. Just water and I made Ramen (but held out the noodles). It’s a bitch to drink that much water, as every swallow hurts the muscles in my throat.

Apparently after the neck dissection surgery this Thursday I’m gonna wake up 1) hopefully about to find out I’m cancer free, 2) with fucking DRAINAGE TUBES sticking out of my neck for 7 days or something, so again going home like a monster with tubes sticking out of me, and 3) with no more feeding tube, so I’m gonna need to eat every meal and drink every drop by mouth starting Thursday evening. I hope I can swallow easier by then (five days from now). Right now it’s a chore. Feels like I got punched in the throat or something. Muscles are very sore, only partially responsive. Takes 10 minutes (at least) to drink a pint glass of water.

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Panic on the Streets of Beaverton

August 27, 2016

So the worst part of the post-surgery healing is this feeding tube. It saves your life, as there’s no way you’d be able to eat enough or drink enough to live without it, but it sucks in so many ways. I received a LOT of check out information from my RN at the hospital, but the thing she stressed the most was, “don’t fuck up and let your feeding tube slip. It’s exactly 55 centimeters from the exit of your nose up, over and down into your belly. If you don’t keep the tube taped very strongly, it might slide out. And if it does, you’re fucked. You might try to slide it back in and fuck up and run it into your lungs or some pocket in your gut or who the fuck knows. And then you pump 250 ml of adult baby formula directly into your lungs and die and just don’t okay. Just make your life easier by not fucking this one thing up for once jesus”

Smash cut to me, waking up on the couch from a pleasant nap last night, wondering, “jeez, why is there so much tubing sticking out of my nose.”

Long, horrifying story short(er), I had fucked up, the tube was untethered and 25 cm of it had freely pulled up from out of my belly and was hanging somewhere halfway down my throat. I freaked the fuck out and very very slowly threaded it straight down again until I got to the 55 CM marker. Then I called the doctor. I told them I could take a meal or two orally, and so they said to skip my first meal this morning (no adult baby food, substitute water and this expensive small batch hand crafted artisanal creme brulee that was really good but crazy rich. Before having my second meal (due at noon), I will go to the hospital and they will x-ray me and make sure the tubes don’t need to be re-run.

Ugh.

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Margins Negative

August 26, 2016

Margins negative. That means the tumor that got removed was surrounded by at least a few mm of non cancerous skin, which means there’s no tumor left in my throat. It’s fantastic good news.

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1.5 things that made me cry

August 25, 2016

It hurts to talk, so I tend to whisper/rasp when I’m speaking. I just had to explain to Dylan that we missed his preschool friend’s party which Dylan had been looking forward to no shit for six fucking months because his retarded friend started talking about it in fucking February because he was so excited even though the party wasn’t until this last weekend. Anyway, I just had to explain to Dylan that we missed his friend’s awesome Dragon Party “because of Daddy’s cancer” which almost made cry hearing my mouth say those words.

But then an hour later I decided to force myself to try and drink again and I was able to sip huge gulpfuls of water into my fucking mouth and swallow them like a normal human being. This wasn’t an incremental improvement, it was a milestone, I could swallow again suddenly, like a person who doesn’t get fed through a fucking straw. And that completely made me cry. I can drink water. Enough water to live. And it’s not terrifying or panic inducing.

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jokes

August 25, 2016

my two most recent FB posts. Apparently my sense of humor is creeping back to life:

From Last night:
It’s at times like this that I regret ending every prayer for the past ten years “and Lord, as always, feel free to give me cancer as long as you suspend Tom Brady for four games of the upcoming season.”

From this morning:
Doctor [looks around to other OR room staff, down to me] Now, we need to make sure we’re doing the right procedure on the right patient here, so we have a bit of personally identifiable info that only the right Jonathan Rouse should know [checks clipboard] What’s your most listened to Spotify song since you first subscribed?

[Me, nervously] The Title track off of 5150, the first Sammy Hagar Van Halen album.

[OR erupts in derisive laughter]

[Doctor, unable to suppress mockery] Jesus. Are you sure you don’t have EAR cancer. What the fuck, man? [high fives anesthetist]

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Humiliation

August 24, 2016

The surgery left no stitches. The way mucous membranes work, I guess, is you just carve shit off them and what’s left heals up, which is gnarly and horrifying. The entire back of my throat is exposed scar tissue. Anyway, the point is, I didn’t feel like brushing my teeth after I woke up from surgery. Or the next day. By day three I started to feel like a disgusting monster, like I could feel tartar just forming yellow plaque deposits on all my teeth, so I tried to brush my teeth, only to find out:

You can’t open your mouth wide enough for a toothbrush to reach the back teeth if the membrane near the back of your mouth is freshly wounded scar tissue.

Also, and this is the best part: I turned the toothbrush sideways to fit it through my mouth more easily (like Han Solo does when he’s flying the falcon out of the space worm’s mouth in Ep V!) and it slid in a little TOO easily and I poked myself in the exposed soft tissue of the remnants of my throat because I am a monster who does not deserve love.

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Morning of day Five

August 23, 2016

Okay, so it’s been four days, I’m halfway through my fifth and it’s totally manageable in the short term. I’m back on pain killers, because for whatever reason the pain increased on days 3 & 4 from the first couple.

The thing that I’m most nervous about is that three different things have to happen to get to normal again. First thing is, my pain has to decrease. That’s absolutely guaranteed as my surgery wounds heal. Not worried. But items two & three may not.

Second thing is, my muscles have to learn new ways to swallow, to approximate functionality that they never had. Like, the ones that used to force foods & water down my throat aren’t weak, or sore, they’re gone. Carved out of my head. So the very tips of those muscles have to do the job that the whole muscle used to do. That might never happen. Certainly now it’s not happening. I can eat Apple Sauce, but mostly by pushing it to the back of my mouth and waiting for gravity to pull it down. That works very very slowly and not for anything much thicker than apple sauce. It definitely doesn’t allow you to drink water, as any large qty will try to go up your sinus cavity and flood your breathing like you’re being waterboarded and it is terrifying.

Third thing is, maybe new tissue will grow. Scar tissue will form, or pull existing muscles into new positions. Again no idea if that will happen, when that will happen, what it will be like when/if that happens. Complete mystery. All I know for sure is that right now, on the very big IF that is, “IF they got all the cancer out,” all I have to worry about is that I may never eat or drink right again. Sure it will get better. I’m very sure it will get better, and I’m very sure this tube will come out pretty soon. But I just spent this morning drowning in my own mucous from my nose every few minutes and being forced to sit upright to drain what previously would just have been the sniffles ’cause I couldn’t swallow a thimble full of my own snot.