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]



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.


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.


Jesus fucking christ

August 20, 2016

36 hrs later. So painful. Worried all the time. Throat muscles not responsive. Major trauma. Won’t get pathology back for 12 days. May not even have been worth it. Shoot me.


Five Thirty AM in the Morning

August 18, 2016

Holy shit. I just got the email from the doctor’s office. We have to check in at the hospital tomorrow morning at 5:30. The surgery hospital is 25 miles from here ’cause apparently throat robots are a rare & precious robot and they don’t grow on trees. So we have to leave at 5:00 AM. And since Robin’s coming with me we have to figure out what to do with the kids. I guess they will crash at a friend’s house tonight.  The surgery is scheduled for 7:30 AM and is supposed to take one hour so by 8:30 I should be cancer free, although it could be several weeks before that’s official. They have to have a pathologist examine the cut out part to make sure it isn’t cancer all the way through to any of the edges, cause if so, that means there’s still some cancer in me.  Then a few weeks later there’s a second surgery I think, to remove some lymph nodes and dissect them to search for further evidence of cancer. If both of those are clear I’m cancer free until they check again, which should happen every six weeks for a year, and then less frequently for like four more years.


Long time no talk

August 17, 2016

The worst part about having cancer is that any time one of your friends calls whom you’ve not spoken to in a while, you’re worried that they’re calling to say that they have cancer, and it’s like, Damnit Frank you can’t just let me have this ONE thing?!?


That’s a Spicy Meatball

August 2, 2016

I was eating Ravioli tonight & I accidentally stabbed myself in the fucking tumor with a fork because I am a monster who does not deserve love.


August 19th 2016

August 2, 2016

So. Surgery it is. No chemo, no radiation (hopefully – if the surgery doesn’t remove the entirety of the tumor, or if the follow up removal of my lymph nodes shows any lingering signs of the cancer, then I’ll have to have radiation as well).

My wife’s friend Joan joked that while she’s sure everything will turn out just fine, the polite thing for me to do would be to fill out my absentee ballot for Clinton prior to the surgery.

I’m not worried about dying on the table or anything, but I am shocked & a little nervous by all the medical firsts (for me) that this date will represent. First time checking in to a hospital for an overnight stay. First multi-day stay in a hospital. First general anesthesia. First surgery of any kind. First stitches. First time waking up in a hospital.

I’m also mildly nervous what it’s gonna be like when I wake up. Will I be able to make my muscles work? Will I be able to swallow?

I know how much easier I have it than many other patients, and I’m trying hard not to be whiny about things. But I’m definitely nervous.


Don’t You Think

July 21, 2016

I had just figured it out. After twenty years of saving & investing & living a little below my means, I was just starting to feel like things were coming together. I’d left my job and I was thinking that maybe I had figured out a way to not have to return to the work force and that I could spend my time with my kids & exploring a new city & traveling. And then I got cancer.

The call from the doctor was like an Alanis Morissette song. In that it was awful and I never want to hear it again.


8 out of 10

July 19, 2016

There’s an ancient game on the iPad that I sometimes drag out & still play, even though I win almost every time. Occasionally I lose. Rarely enough to not be discouraging, but often enough to keep the game challenging. I started counting last week, and it turns out I win about 87% of the time. Those are better odds than the 70 -80% survival odds I have, but still in the same ballpark. Now whenever I play the game and win, I think “that’s one option, one runthrough, where I lived.” And when I lose, I think “and that’s the other option. In that one, I died.”