Thursday, August 3, 2017

Wait! What?

First things first: The pathology report came back with no evidence of cancer.

Yes, Rachel and I are relieved we don't have to fight another bout of cancer at the moment; but it took less than ten seconds of the appointment for the lady ENT to tell us that information.

Now let me tell you about the remaining two hours.

Holy. Shit.

But before we get to that, let me start thirteen hours earlier:

I went to sleep at 9:30pm (my usual time) and Rachel and I both set our alarms for 4:30am (about my usual time to get up). The plan was to make lunch for the four of us, get the boys up around 5:15am (they had no idea we were going to Seattle), eat breakfast, then leave between 6:15-6:30.

At 2:30am I hear my youngest get up. I checked on him, tucked him back in bed, and then got back in bed myself--only I was pretty awake. I had slept well for five hours, so I knew that I was probably up for good.

I wasn't nervous or anxious or really had any worries that kept me awake, I was just, you know, awake. So I lied there thinking about the next few stories I wanted to write, along with the few I am currently finishing up, and just let time pass. In hindsight, I should've just gotten up to write. Instead, I kept hoping I'd get another 30 minutes or so of sleep. Yeah, I knew better.

A little while later I hear, "Daddy."

It was my youngest.

I get out of bed and see it's now 4:00am. He hadn't gotten back to sleep either.

I'm thinking there's not much that can be done; he'll have to muscle through the day we're getting ready to have.

Then I was so very thankful it wasn't my oldest that had interrupted sleep. That would have been a nightmare.

So I tuck him back in bed again and go back to my room. As I'm getting in bed I hear Rachel say, "Is he ok?"

"Yeah," I answer. "He and I have just been up since 2:30."

"Jesus," she whispers.

I don't think he had anything to with it.

At 4:30 the alarms go off. We get up, make lunch, get the boys up, watch The Three Stooges and Bugs Bunny while eating breakfast, then leave at 6:20.

So far, so good.

The drive and ferry ride were fine--we even made such good time we got an earlier ferry than the one we were aiming for--and we get to the city with plenty of time before the appointment.

I really didn't want to take my kids to this appointment. For one, if I the pathology report was not in my favor then I certainly didn't want to deal with their shit on the way home. For two, I didn't want to deal with their shit, period. These trips are already stressful as it is. They aren't quick little jaunts down to the local medical facility like it is in big cities--no, this is an all day event.

But we decided to go ahead and take them. (I do thank Stacie for offering to watch them, though. You rock.)

The doctor's office called the day before and asked if I could check-in about thirty minutes earlier than my scheduled time. Due to the procedure she was doing, she wanted to make sure she had enough time to get everything done.

So a little before 10:00am I check-in while Rachel got the boys setup in the lobby and on their iPhones. They hadn't played games in a long time so they were pretty excited.

Then the nurse called me back.

I don't know if any of you have had a scope down your throat before, but here's basically how that goes: they spray both nostrils with some numbing spray, then run a camera up your nose and down the back of your throat.

I've had this done several times and when it's done correctly it's not bad at all. It's pretty cool, actually, because they are getting video of the vocal chords and the surrounding area.

Well this time the SLP comes in (I've known her a couple of years now) and sprays my nostrils. But then she also stuffs each nostril with cotton balls that are loaded with lidocaine.

That should have been my first clue this was not going to be a regular check-up/visit.

She let those cotton balls stay in my nose for something like ten minutes, then moved me into another room. A few minutes later the doctor came in and said the pathology came back and that it is papilloma (which was what she originally thought it was). It will be another week before we know the subtype.

The subtype is important because some subtypes are more prone to turn into cancer than other subtypes. Regardless of the subtype, though, I'll be monitored pretty closely. But I'll be monitored more closely if it's the I-can-turn-into-cancer-at-any-moment subtype. I'll let you know more when I do.

"Is it cancer?" I ask.

"It's not cancer," she answers.

Rachel sighs, relieved to hear the news.

There's the ten seconds

Now the lady ENT tells me what the plan for the day is.

Remember, when I told you I was tired of being rare? Well...

During surgery last week she was able to get the biopsy, but she wasn't able to get all the papilloma--well, it's more like she couldn't get much of it. This is because when I was asleep, my passageway got even narrower. On top of that, my anatomy is such that, while still in the range of "normal," it is on the challenging side to work with.

Bottom line: She wanted me awake to finish the procedure.

Um, okay.

I wouldn't be relaxed like one is when knocked out from anesthesia, so my passageway would be bigger, and I'd be able to move and help her when she needed it.

"So, we're going to numb you up pretty good," she says.

Remember, my nose is already numb from the cotton balls, and the back of my throat is a little numb from the spray the SLP used.

But wait. There's more. So much more.

She sprays the inside of my mouth with lidocaine, but the first squirt gets my lips and now they are going numb. Then she sticks a needle into the right side of my neck, injecting more lidocaine, then does the same to the left side. The left side hurt, burned actually as the needle went in and released the lidocaine. The right side didn't because it's still numb from last year's surgery to remove the tumor. I think she did two injections on each side of my neck.

Then she had me gargle some lidocaine and swallow it down, trying to numb my throat.

At this point I'm doing ok. Yeah, kind of uncomfortable to get shots in the neck, and the taste of the lidocaine was disgusting, but overall, nothing too horrible. (It bothered me more psychologically to get injections into my neck then it did physically.)

They're going to run a larger scope than I'm used to up my nose and down my throat. Ok. I don't really know what that means physically, but sure, whatever.

They give a pair of goggles to both me and Rachel, then the doctor and the SLP put their goggles on, (and I assume the laser technician and the transcriber did, as well) for eye-protection from the laser.

I, of course, have had my eyes closed ever since she said she was going to inject my neck with lidocaine. I didn't really open them until the procedure was finally finished.

She inserts the scope into my right nostril and it hurts. It's like pressure only with this uncomfortable grinding feeling that I would rather do without.

"Ok," she says. "More lidocaine." She pulls the scope out, then sprays my nostrils again.

On the second attempt she got further but I could feel the scope on the back of my throat. I have a very sensitive gag reflex and so I started, you know, gagging. We gave it a minute to see if it would pass, but of course it doesn't. Every time she went to extend the laser portion of the scope (to get to the part she needed to laser off), I would gag.

She pulls the scope out again, then injects each side of my neck with more lidocaine. Then she says, "I'm going to inject some into your throat and it's going to cause you to cough."

Wait! What?

She injects a needle through the middle of my neck and directly into my throat. I feel the lidocaine puddling in my throat and sure enough, I begin to cough.

Holy shit! She just put a needle through my neck and into my throat!

I'm trying not to let that thought overpower me as she gives me more lidocaine to gargle and swallow.

Attempt three: she inserts the scope again and it still kind of hurts as it passes through my nostril, but not enough for me to say anything. I'm reaching the point that I want this shit done, and I don't want to prolong it and go through more of the numbing procedure if I can help it.

"You're doing great, Randy," I hear the SLP say. She is on my left side while the doctor is on my right.

I think there's a screen behind me where the video is displayed, allowing the doctor to see what she's doing. I wonder if Rachel is watching it.

I hear the technician say, "We're ready," or something like that. Then I hear a buzzing sound and can slightly feel the laser cutting away.

"Breathe through your nose," the SLP says. She's rubbing my left arm.

"You're doing great," the doctor says; and I feel like I am.

But then I feel it.

I feel it burning me.

Sharp, concentrated burning as the papilloma are incinerated.

Then I smell it.

The smell of burning flesh.

Of my burning flesh.

I don't panic, but I flinch.

She stops.

"I can feel it," I say.

She pulls the scope out and we go through more of the numbing process. When she injects more lidocaine directly into my throat, I don't cough as much. This is good because it means I can't feel it; that my throat is getting numb. "Not as much coughing, this time," she says to the SLP. Then more neck injections.

There's some joking between all of us about how sensitive I am, and about how much lidocaine I need.

But it is what it is. And she is oh so patient with me.

I shake my head and whisper, "Shit." I don't know how much time has passed, but I know they've been trying to get me numb for quiet awhile now. My patience is starting to wane. I'm getting tired of going through this.

Attempt four: I still feel the scope going up my nostril and a little bit on the back of my throat, but I stay quiet. We can get this done, I think and proceed to wait for the laser to start.

The technician signals he's ready, the SLP is still rubbing my arm, and the doctor is in position. I have no idea what Rachel is doing. I want her to come up to the chair and take my hand so I can squeeze it when the doctor begins again. But I know there's not enough room. I remain quiet.

The buzzing sound.

Again I can feel it burning me, but not as bad as before. However, I can feel the scope at the back of my throat and I start to gag. We wait to see if it'll pass. It doesn't.

My eyes water. Not because I'm sad or crying, or even from frustration, but rather from squeezing them so tight for a long period of time. A tear strolls down my right cheek and I wipe it away.

This time she keeps the scope in my throat (it's in a good position) and injects more lidocaine through the front of my neck and into my throat. I'm trying to keep myself from gagging by swallowing my saliva and taking short quick breaths.

"Slow down your breathing," someone says to me. I think it was the SLP. I do, but I'm thinking I need the short quick breaths to keep from gagging. I alternate between the two breathing techniques and along with swallowing my saliva, am able to keep the gagging to a minimum.

"Shit," I repeat.

She begins the laser again.

I can't feel it on the left side of my throat but when she moves to the right side I definitely can. I flinch a little but not too bad. "You ok?" she asks.

I give her a thumbs up. I don't want her to stop. We're so close to finishing that I don't want to do anything to interrupt the process. Let's just get it finished.

My right foot shakes as I involuntarily try to comfort myself.

She begins again. Short little bursts of a buzzing sound followed by the laser doing its thing. Most of the time they were quick bursts, but there were a few longer ones--like she was sculpting wood using a chainsaw.

I feel the flesh being burned off, and I'm confident the smell permeates throughout the room. I wonder if Rachel can smell it. I will learn later that she could.

"Just about there," the SLP says. I grab her hand and squeeze, hoping I'm not hurting her.

Several minutes later the doctor says, "That looks to be all of it." Then she pulls the long-ass scope out through my nose and I try to breathe normally.

Both the doctor and the SLP step back from the chair and look at me. Out of the corner of my eye I see Rachel still sitting in the corner.

"You ok," the doctor asks again.

I slowly open my eyes for like the first time in an hour or so. Everything's blurry. My eyes are wet so I rub the tears away with a tissue. "Yeah," I answer, but not much volume came out. My voice cracked, had no pitch, and was less than a whisper. "Did you get the vocal chords, too?" I choked.

"Yep," she says, and I'm thinking: What the fuck? You just freehanded a laser over my vocal chords. There was no robot?

But I don't say anything.

Because I can't.

I am grateful neither she nor I sneezed, though. If you know what I'm saying?

Then all of a sudden this rush comes over me and I'm trying to figure out what it means and where've I've felt it before. Well...

When I was in elementary school, me and some buddies were rollerskating on our street--I must've been eleven or something. Anyway, there's like four of us, and for some reason we have a long, rusty old pipe. I have no idea where we got it, but we were skating with it down the middle of our street. For some reason it was lying in the middle of the road and we were all going to pick it up and skate with it. You know, like 10 to 11-year-old boys do.

Before I reach to pick it up, though, I see my dad at the edge of our driveway looking toward us, but I'm too far away to hear what he's saying. (I learned later he was calling me home.) In any case, I bend down to pick up the end of the pipe. But as I do, the other boys picked it up before I got my hands on it and the edge of the pipe clocked me in the right eye. I immediately reached for my eye with both hands and started skating home--as fast as I could--screaming. At one point, I pulled my hands away from my face and all I could see was blood. Everywhere. Covering my hands, running down my arms. I panicked. I remember thinking that's it, I just lost my eye.

My parents took me to the emergency room and I remember the doctor saying something like had I been hit a couple of millimeters lower then I would definitely have lost my eye. He stitched me up and we went home.

A few weeks later my mom took me to our family doctor to get the stitches out. I sat there dutifully still while he plucked each stitch out one-by-one, though I felt each tug on my eyelid. When he finished, I was standing next to my mom on the little cushioned bench that was in the room while she talked with him.

Then I felt weird. I got all hot and clammy--like life was just draining out of me.

All of a sudden the doctor grabbed me and immediately turned me upside down. He held me that way for a few minutes.

I was too young to know what was happening or to state what I needed; but the doctor knew. I was about to faint.

I look up at the Lady ENT and say through a cracked voice, "I'm going to throw up."

She quickly gets a bedpan and hands it to me.

A minute later I say, "I need to lay down."

I can feel it. I'm going to faint. It's the same feeling I had when I was eleven years old, only this time I knew what it meant. My stomach was churning and doing flip-flops, and it felt like my blood was draining through my feet and onto the floor.

The doctor immediately lowers the back of the chair I'm in. I start to squirm, trying to get comfortable--trying to not puke.

The room's hot. The SLP gets a cool, wet washcloth and places it on my head. She then puts ice on my chest. A nurse opens both doors to circulate the air.

I feel horrible. I just want to crawl inside a hole somewhere--anywhere but here--and just let time pass.

I'm given the room for however long I need, so I stay put. Rachel checks the boys (I think this might be the second time she's gone out to the lobby to check on them) and then comes back into the room.

After awhile I start to feel better. The doctor and SLP check on me several times and state that color is returning to my face. I no longer feel like I'm going to throw up.

Rachel helps me stand and we go to get the boys.

Two hours after I initially checked-in, I was finished, and we were headed home.

When it was looking like the boys were going to have to come with us on this trip, I made the suggestion one night to Rachel that maybe I should go alone and she stay home with the boys. (I had no idea what this visit would entail. I thought it was just a quick follow-up where the doctor would be taking a little bit of papilloma off. I mean, she wasn't putting me under, so of course I could drive myself.)

Rachel didn't like that suggestion, and quite frankly, I didn't want to go alone. I wanted her with me. Every visit to the doctor is nerve-wracking these days because at any time one of us could get the news we fear the most.

So I am very grateful I didn't go alone.

She drove home and I slept. The boys did pretty well through the whole thing. They do surprise me once in a while.

I asked the doctor about speaking. It was very difficult to get that out, so I knew I wouldn't be able to really speak for awhile. This was a much different feeling than I had after surgery. I could talk fine after surgery; more evidence that she was unable to get much papilloma off during that time.

So I'm not talking. Well, not much, anyway. No whispering. No forcing my voice out. I am to let my body tell me what it can do.

My follow-up is in three to four weeks. Hopefully, I'll be talking better by then.

The whole experience absolutely sucked, and I hope all of you are spared from having to go through something similar. Through it all, my wife, kids, the SLP, and the lady ENT were fantastic. I appreciate them beyond words.

Well that's about it. I'll let you know about the subtypes after I know something.

Until next time, my friends.

Take care.

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