The Hospital: Day 5

July 23, 2005

I was finally sleeping when I heard someone calling my name very softly. I awoke to see a young Asian doctor standing beside my bed. I’d never seen him before this morning.

“Hi. Can you tell me if you’re completely off oxygen?”

I was never on oxygen, actually, unless it was during surgery. Post-op, I’d not had any that I could recall. I wished idly at that moment that I had some, though, as the doctor was wearing a bit too much cologne, and it was a bit stifling with him right next to me. I croaked out that not only was I off, I’d never been on.

“God bless you, thank you so much. I’m so sorry for waking you.”

I mumbled that it was all right, since it was almost time for more vital checks and breakfast. He stepped over to the window and made some notes.

“Thanks again. Have a blessed day.”

And he was off. A rather strange start to my morning. Someone from housekeeping also popped in, tidying up whatever needed to be tidied, refilling paper towels, giving me another cheery greeting. Then, breakfast – cream of wheat (yay), more Boost (boo), coffee (decaf, no doubt, and untouched by me), milk (not ice cold as I like it), and tapioca (no thanks). Before I could get myself in position and the right frame of mind to eat it, the doctor also appeared.

He removed the second drain from my chest and gave me some very good news: time to go home. He’d already told the discharge unit to start the paperwork, so I should eat up and then they would release me because I was doing well and hospitals are full of sick people. Hooray! Even though I wasn’t feeling tip-top, and even though every single person I had encountered on the staff there was just as nice as they could be, it would still be better to be home amongst the family rather than in the hospital. He rechecked my incision, pronounced it a work of art – as had my family members over the days – and said I was to come to the office on Wednesday. No problema.

I started eating, and my family members started appearing as well. They were quite happy about the news of my impending release, and I slogged my way through breakfast, then had some help getting dressed. By the time we were all done, I was tired again and ready to go back to sleep. But it wasn’t too much longer before the wheelchair arrived and we were headed to discharge for final paperwork. After signing off, we rolled down to the entrance of the hospital and I managed to get into the car without damaging myself or anyone else.

We went to my mom’s house, where I promptly went to bed while they did everything else, like bring in my belongings, get prescriptions filled, and stock up on soft foods. When I woke up, it was time for some vegetable beef soup, whirled in the blender. Then sleep. Then up again, and time for more soup, which I promptly threw up after a couple of bites. I think perhaps things had a bit too much sodium after my survival on hospital food, as I’m sure that food had virtually none. So we tried something else: real food, to control the contents, whirled in the blender so it had the consistency of baby food. That worked out quite a bit better, and fortunately, I had no more puking episodes. I was still having some intermittent issues with swallowing, which led to coughing, which led to as much pain as the puking, since it involved so much tensing of the neck muscles. With careful eating and practice, this also got better.

Mostly, though, I ate and slept – sort of like my cats, really. I wound up sleeping in the recliner in the living room, since this afforded me a nice 45 degree angle so as not to choke on my own saliva as I tried to swallow, and so I could turn on my right side, rest my left arm on a pillow, and finally get some much needed deep sleep.

I lost 12 pounds between the day I went into the hospital for surgery and the day I was released. However, I would not recommend the surgery diet to anyone. It’s pretty unpleasant.

The Hospital: Day 4

July 22, 2005

Today, one of the drains in my chest came out – well, not on its own, the doctor removed it. The tubes were stapled into my chest much like the incision in my neck was stapled closed. One snip, a little pulling, and presto! One tube removed. That left me with one to tote around each time I got up to toddle off to the bathroom.

They also removed my continuous hookup to the IV today as well. Since I was eating (or more accurately, drinking) my meals and getting some water down, I no longer needed the fluids they had been pumping into me. Instead, one of the nurses appeared every six hours to hook me up to a bag of antibiotics. Once that was emptied, I was once again unhooked so I could move around as the need struck me.

My roommate in the hospital – Mrs. Green – whom I had not actually seen once but had heard, was leaving this day. I wasn’t having a very good day, as my throat was hurting terribly, my head ached still, and I just could not find a comfortable position to lay in, but my family pulled back the curtain so I could see her and wish her well. Her family was also there, getting her things together and waiting on the wheelchair to take her down to the front door. I wondered idly if that would mean I would be by myself the entire day or until the end of my stay, but I was so miserable that I just fell asleep and missed Mrs. Green’s departure altogether when the wheelchair did arrive and they all left.

Story: the night before, the staff had given Mrs. Green some percocet. About 1 or 2 AM this morning, I had been awakened for a vitals check and meds, and shortly afterwards, as I was trying to get into the least uncomfortable position to try and go back to sleep, Mrs. Green woke up and starte talking about little things crawling on the walls. She asked out loud if I saw “those bugs” and I croaked out a negative, because of course the only thing I had seen was the evil smiley balloon. No bugs. I don’t think she heard me, because a few minutes later, she was snoring softly.

The doctor ordered up semisoft food for today onward. Cream of wheat, yummy. Also some pudding, but that was much too thick for me to get down, so I skipped it. More creamy soups, yay. And tea and coffee, although I didn’t touch those. I suspected they were decaffeinated, and who wants that?

Mostly, today was just sleeping, occasionally sucking back some food, visiting briefly with the fam, meds, a few trips to the bathroom, and trying to find something in the dozen channels to watch on television. In the evening, though, no one from the family stayed as they had before. This was a bit of a problem.

Around 10 PM, I had drifted off to sleep finally. I suppose just before 11 PM, I woke up, and had to go to the bathroom. The staff had warned me not to try and get up on my own – after all, who wants a lawsuit because a shaky patient fell and cracked their head open? My family wasn’t there. So, I did the natural thing and rang the bell for the nurse. Problem: when the attendant came over the intercom, I was not able to speak adequately, neither clearly enough nor loudly enough, for them to hear me. So the attendant closed the intercom and turned off the alert.

This frightened me a little. Not because I was in imminent danger of wetting the bed, but because it occurred to me that if I had been in real trouble – like trouble breathing, or something severe – that I could very easily die since I couldn’t make them hear me and none of my family was there to track someone down if I needed assistance. This was one of the reasons they had battled with the nursing supervisor so that someone could stay overnight with me the first few nights, as it happens. I thought while I lay there that if I were in deep trouble I could start throwing things I could reach from the bedside table toward the door and that might get someone’s attention.

As it turned out, that wasn’t necessary. About five minutes later, they wheeled someone in to take Mrs. Green’s place. Unlike Mrs. Green, this woman was not quiet. There was a reason for this, as I was to discover.

While they were positioning the bed, the woman – Vicky – started talking, quite loudly, about going back to her “old room”. I had no idea what that meant, but assumed that they’d moved her here from another floor. The staff told her that she couldn’t go back to her old room, that this was her new room, and this was where people went as they got better so they could eventually go home. That was not good enough for her, though. She rattled on about how her people knew where the old room was (note for those not from the south: “people” in this context refers to family) and she had to go back and get her “cup”. Another note for those not from the south: “cup” in this context means…well, you’ll see.

One of the nurses laughed and told her she couldn’t go back for anything, as all her belongings were right here. Vicky disputed this pretty vigorously, telling them again that she had to go back for her cup. The nurse responded, and I quote:

“There’s no alcohol allowed in the hospital, sweetie. That’s what landed you here in the first place.”

Vicky did not appreciate this at all. She repeated again that she wanted her things and that her people wouldn’t know where to find her. The nursse explained that they would direct her family here, and that she needed to try to calm down and get some sleep. The nurse also poked her head around the curtain and apologized quickly to me, then disappeared before I could raise a finger and point to the bathroom in the universal symbol of “Hey, I need to go, can you help me up”.

The nursing staff stepped out of the room for a moment, and the next thing I know, there’s a shrill alarm going off in the room. They had belted Vicky to the bed to try and keep her there, but she had tried to get out of the bed and triggered the alarm. All the while, she was muttering that she was going back to her old room to get her cup. That indicates some pretty serious issues to me. The staff came back, put her back in bed, and told her to stay there, as this was her new room and everything would be fine. She was not buying that, and asked one of the staff:

“Hey Boo. Run back to my room and get my cup, won’t you?”

Whoever she was talking to didn’t answer, as they were walking out of the room again. I heard one of the nurses on the phone with a doctor, telling him they had one of his patients down here. I wondered if it was someone from the psych ward, because this woman’s focus was only on her drink, almost to the exclusion of her family, and perhaps she needed a little detox. She then tried to get out of bed again, once more setting off the alarm, which bored its way into my brain and I decided then that there was absolutely no way this was going to work.

The staff apparently decided the same thing, because after once more getting her into bed, not five minutes had passed before they were back and moving her out of the room. That had definitely been the weirdest hour I’d been aware of during my stay thus far.

Fortunately for me, not only was my noisy neighbor gone – although I heard her down the hall, as they had an empty room somewhere and I heard a nurse telling her “this is to help you sleep”, ha – it was also time for my meds, at which point I managed to get the nurse to understand that it was also time for something else, and could she please help me stand up so I could take care of the rest.

And then, it was once again time for the quest for a little sleep.

The Hospital: Day 3

July 21, 2005

Each day becomes a bit clearer than the last, opening up entirely new revelations. Mostly of pain, because I tell you what, it’s amazing just how involved the neck muscles are in even the tiniest bit of movement. It’s like when I used to do squats when working out because they involve so many different muscles. The next day, even though you might consider the quads to be the only muscles worked, it’s an overall ache that greets you.

The nursing staff was waking me up every four hours for vitals, and every six hours I was receiving an IV of antibitioics and fluids. The morphine self-administration was also still attached. I was grateful for all of it. One thing I did finally notice on the third day was pressure cuffs on both legs. These would pump and then deflate every 30 seconds or so. I hadn’t noticed them before, even when they had to be removed so I could shuffle to the bathroom and back. Their purpose, I was told, was to help ensure that I didn’t wind up with any nasty blood clots in my legs, since I was fairly motionless the first few days.

I had noticed a couple of tubes in my chest connected to plastic drainage bottles. Like the leg cuffs, these were designed to empty any gather blood and fluid from my left chest to avoid clots. The tubes were inserted near my left clavicle – that’s the collarbone, for those not up to speed on their anatomy. We had a bit of an issue with the drains, or at least the bottles: for some reason where they joined the tubes, the seal was not tight, and the bottles were sucking in air. This meant they would reach their capacity, mostly of air, long before they reached their capacity of fluids which the staff would measure before emptying. Solution? Whoever was hanging around in my room would release the air from the bottles, or the staff would do it during the evenings if no one stayed.

Sounds easy, right? It was easy – for them. For me, it was another ride on a weird pain express. As they released the air from the bottle, and reclosed it, it would suddenly start pulling from whichever tube it was attached to. This resulted in gurgling in my chest which was strange enough, but it also resulted in pain as the pressure evened out once more. Felt a bit like an alien was about to pop out where the drains were.

I spoke to one of the doctors this day. Well, to be honest, he spoke, I croaked, but we managed to communicate nicely. He told me what they’d done during surgery, now that I was coherent enough to understand. My family, of course, knew all about it. They had removed part of the tongue on the left side and sent it to the pathologist for a read while they opened up my neck. They did remove the lymph nodes on the left side, along with part of the nerve, part of the muscle, and part of the jugular. All of that was the reason my left ear felt so huge even though I couldn’t feel it save for pressure when it was touched. It also accounted for the horrendous weakness in my left shoulder, the numbness on the left side of my face, my inability to pull back and down the left side of my mouth (as for a wide smile), and the pain that circled around to the left rear of my neck and up into my head. The incision itself ran from just behind my left ear down to the left clavicle vertically, and then horizontally from slightly under my left jawbone and across my next to just past the right of my chin in sort of a half circle. My sister counted the staples for me: 32. And here I thought the answer to life was 42 all this time. While they were working on my neck, the results came back from the lab: missed. So they went back into my mouth and took more of the tongue further back and also some pieces from the back of my throat in the tonsil area. The second time was the charm, as the margins came back clear. So they sewed me back together, unhooked my chin from whatever they had holding it (I had three little punctures in my chin, as if I were a fish that had been hooked), and sent me off to recovery.

The food choices were still liquids. I’ll say right here that I didn’t care for lukewarm Boost in its can, but I managed to take down about half of it each time, mostly to please my mother. Jello was still dicey, but the soups were ok, if rather bland. It’s a hospital, what do you expect?

By late in the afternoon, we’d all agreed that I could get up out of bed and sit in the chair for a bit, and as long as I was moving around nicely that the leg cuffs could be taken off. That made it ever so much easier to move around nicely, so it was sort of a self-fulfilling thing.

Due to the continuous vomiting, we also decided to switch from morphine to another painkiller, which would allow me to better abe to keep down the fluids I was taking in. They detached the PCA and we went with Roxicet, which is oxycodone and acetaminophen (Tylenol). Every four hours, the staff started nudging me to swig back a dose. Administration was rather interesting: I couldn’t lean my head back in order to drink the entire thing from the dosage cup itself, so they loaded it into an oral syringe and I was able to take it about 1/4 teaspoon at a time, still swallowing quite a bit of air along with it. Cherry flavored belches. The new drug did take the edge off the pain, but nothing could touch the headache that was with me constantly. Solution: motrin. From another syringe. That dulled the headache a bit. There was still no comfortable position to sleep, but I slept a lot anyway.

I received flowers from several people, and I’ll thank them right here for that. They leant a bit of color to what otherwise was you standard beige hospital coloration (which includes the patients, mind you).

One last story for this day: on the first day, one of my aunts brought in a smiley face balloon. The standard yellow colored, big happy face type. It had a small weight on the bottom of the string to keep it in one place, or at least from floating off to join its other helium-filled buddies at some secret hideaway, and it was in front of the small closet that was across from the foot of my bed. During the evening on day three, I had awakened for some reason not related to the staff wrapping a blood pressure cuff around my arm or taking my temperature under my armpit. As I opened my eyes, trying to recall exactly where I was again, the balloon swayed in a slight draft. I swear the thing looked like one of those evil smiley faces, with the canted eyebrows, and in the dimmer light of the room at night, it looked like it was winking at me. At first, I couldn’t figure out what was going on, and it was a little upsetting. But as things cleared, I realized it was just the happy balloon, greeting me from its post as it kept watch over me. That allowed me to fidget around in a vain attempt to find a comfortable sleeping position and then drift back off to sleep until the next scheduled something or other.

The Hospital: Day 2

July 20, 2005

This day is a complete haze, except for one moment of clarity and one repeated activity. My family tells me I was mumbling about a lot of things and asking people how they were, but I don’t remember any of it. I’m just happy that they aren’t telling me I did something truly worthy of shame and/or embarassment, since those stories will never die until you do.

The doctor wanted me to eat, since I’d had no food for a day and half, and he ordered up liquids for me. Broths, Boost, Jello, tea, milk, and coffee of all things were on my tray for breakfast, lunch, and dinner. Swallowing was an adventure in not offing myself via choking. You never realize how much your tongue is involved in things until you lose about half of it. I swallowed enough air to pump into a blimp, which resulted in some interesting moments as my body expelled it one way or another (mostly through gigantic belches, after which I always excused myself, according to my observers). The Jello kept geting caught at the back of my mouth, and left me with two choices: either wait for it to melt, at which point I could get it down, or help it along by drinking a little warm broth (to help it melt) or something cold (at which point I could usually wash it down with another gulp of air).

One unpleasant activity I do remember is more puking, multiple times. Between my body getting rid of the blood I swallowed and the morphine, I barfed several times throughout the day. Each time, my neck fired itself up to remind me that it had some trauma the other day, and would I please stop this silliness.

The part I remember best about this day: the nursing staff telling me they wanted me to use the bathroom. I wasn’t particularly thrilled about the prospect of moving, as even with medications, the pain level was significant. I had a headache that would not disappear even when the other pain was dulled by morphine, and trying to find a comfortable position in the bed was both agonizing and annoying.

The nurses told me that if I didn’t go on my own, they’d put in a catheter. That spurred me into action. With my IV disconnected for the moment, I shuffled into the bathroom. In the hospital, they measure everything: the drugs they give you, your blood pressure, the amout of vomit you puke up, your temperature, your urine. Hanging on the edge of the toilet, in the bowl, was a cup that held up to 26 ounces. Once you’ve done your thing, the staff notes the amount, dumps it, and then flushes for you.

If you’ve seen the movie Apollo 13, you’re probably familiar with the part where Swigert (Kevin Bacon) is guiding the lunar module in a sort of docking maneuver. That’s about how it was with me. I managed to plant my ass on the toilet without incident, which boded well. I also managed to overflow their measuring cup – but this helped me avoid the specter of a catheter.

I was more awake on day two, but wished I weren’t. I was starting to notice the weakness in my left arm, my left shoulder and the left side of my face were almost completely numb, and my ear felt like it was about five times its actual size. They had also placed two drains in my chest to make sure we had no clots in that area, which made my chest alternate between numbness and a stinging, burning sensation that I couldn’t itch and that would only go away when the pendulum swung back to numb.

Overall, I’d rate the day 2/10. And I couldn’t even dance to it.

The Hospital: Day 1 (Part 2)

“Are you allergic to any medications? Ever have any surgeries? Major illnesses? Recent cuts or open wounds?”

Over and over, various people wandered back and forth past my gurney and asked thse questions again while checking my wristband to make sure an alien pod person had not somehow taken my place while I escaped.

During all this, I met the anesthetist who would be taking care of me during surgery and ensuring that I didn’t do something gauche during the procedure, like swallow my tongue or die. She was very pleasant, asked me the questions again, and then asked me one more: are you in any pain right now?

As it happened, I was. I had not taken any food or drink in after midnight, nor had I had taken the medication I was on to control the pain in my mouth and ear while we went through the medical hoops. It had been about twelve hours since my last dose, in fact, and the armies were marching in my mouth and head by this time. I mumbled something to her to this effect, and she promised to come back and give me something for pain once the nurse got my IV set.

Which, all things considered, could have been worse. It almost, but not quite, felt like someone jamming a 2×4 down the back of my hand. I know she was being as gentle as possible, but I don’t imagine that it’s ever a picnic trying to force something into a vein in an area where there isn’t much skin to start. But she got it in and I only gave one yelp as she was taping it down with stuff they should probably be using on the space shuttle to keep that foam on.

As promised, the anesthetist did come back to me. She was speaking to me while adding something to my IV. Unfortunately, I have no idea what she was saying, because about five seconds after that stuff hit my veins, I was out, and I have no memory of what happened past that point.

A story: when I was in high school, I played fast pitch softball. During one game, I slid hard into third base, and managed to tear up my right leg from the ankle to the knee. Not only was it a bloody mess, it had clay and pebbles and whatnot embedded in the wound. Every day, twice a day, we had to debride the wound with Betadine and a stiff bristled brush, scrubbing the dead skin and crap out of it.

That was nothing compared to this.

I woke up in the most agonizing pain I have even encountered in my entire life. Recovery. Surgery over. Someone telling me that I had to stop moaning because that meant I was probably holding my breath, which would make it worse. Telling me they were putting morphine into my drip. Telling me this was normal and it would pass, that I should try to think calming thoughts while the drugs did their work and take deep breaths. I imagine it’s a lot easier on that side of the gurney, but of course can’t blame him for doing what he knows needs to be done.

They hooked up a PCA for me, which is just medical talk for a button the patient pushes to administer pain medication. In my case, morphine, which could be administered every 6-8 minutes by clicking a button. It’s all rather foggy, as I was also getting drips of something, but I distinctly recall being a little angry because the IV in my right hand was painful to the point where it was hard to press the button with that hand, and they had taken a piece of nerve and muscle from the left side during surgery, so it was impossible for me to click with my left. Somehow, I managed to properly give a click every now and then when I was awake enough to realize just how badly everything hurt.

They wheeled me into my room, and my family came in, but honestly I don’t remember who was there, what they said, or what I managed to get past my newly redesigned tongue. I do remember puking up blood that had gone down my throat during surgery. Several times. Black, black liquid that was not only unpleasant to look at, but which was a horribly painful process to get out, since all the muscles around my throat and neck were involved in forcefully expelling it.

I drifted off, occasionally clicking away at the morphine, with my family watching over me.

The Hospital: Day 1 (Part 1)

July 19, 2005

Check in time. My mom, aunt, and sister came to get us early this morning, about 6 AM. We took a few pictures of my neck and tongue, as a sort of “before” record – plus, the gross out factor of the tongue is good, and my sister (who used to want to go into medicine) liked that very much.

The sunrise was very beautiful, and naturally, this being Florida and all, it was already 100 degrees outside and humid. I was prepared in my sweats and t-shirt, and carried nothing at all with me. My mom took care of my id and phone, my sister took my gym bag, which had clean clothes and a toothbrush.

Once at the hospital, we checked in at admitting and then went up to the pre-op area, where we waited with the other suckers – I mean, patients – who were also there for early appointments. The check-in nurse presented me with a pager like those you get at restaurants, about the size of a large coaster. Table for one? Every so often, it would generate a high pitched single beep. I suppose that’s so they can find the damn things if someone leaves it in a chair or under a newspaper or something as they ready themselves for what lies ahead. The waiting room was very, very quiet and not uncomfortably cold or warm. Anyone who has spent time in large facilities knows what a treat this is, since there always seems to be a pocket of air where you regret not bringing your parka and another nearby where you feel like you’re on the surface of the sun.

I did not get the joy of being buzzed for the gurney that awaited me, as the check-in nurse called the waiting room and had the assistant let me know it was time. We walked back to the surgical holding area. My mom gave me one last word. “Whenever they do something, ask them what it is and make sure they check your wristband so they know you are you.” Yes, ma’am.

The holding area looks like any standard emergency room you see on television, without the chaos that is usually associated with trauma emergencies. Like the waiting room, it was quiet, with the occasional beeping of monitors and the ringing of the phone the only noise other than the murmur of staff talking to patients and one another. The nurse took me back to the last screen on the right, where I was given a bag for my belongings and told to strip to the skin. On the gurney were little paper booties for my feet, a paper hair net to keep my flowing locks (ha) out of everything, and a cloth gown that I was told opens in the back – like this wouldn’t be common knowledge from all the jokes made about peoples’ butts hanging out of the things.

Once suitably attired for my waiting table, I crawled onto the gurney and the interrogations began.

Slice n’ dice

All of that brings us to today. Surgery day.

We took some before photos of my tongue and neck. The tongue is fairly gruesome, so those photos won’t be for the faint of heart.

Originally, surgery was scheduled for 12:30 PM, with check in time at 10:30. When we did the pre-admitting testing, we were told surgery was now at 7:30 AM with check-in at 5:30. I hate mornings. Our confirmation call yesterday finalized the surgery at 9:00 with check-in at 7:00. Not quite as early, but still a restless night with only a couple hours of sleep.

And that, dear reader, brings us up to date. It’s almost three months to the day that I first noticed the sore on my tongue. Fortunately, I saw it early and took action early enough to avoid something more horrible. Like they always say: if you notice sore that doesn’t heal, strange lumps, or anything else that doesn’t look right, go to the doctor. It could save your life.

Two out of two scans say…

The PET scan showed activity in the lymph nodes. The CAT scan verified a couple of very small lesions (about 1-2 mm each) on two nodes.

So, armed with this, we head to the next doctor, who will be performing the surgery that we all agree is necessary. He’s a very nice guy who has been doing this for about 30 years. A younger doctor is also there, and is wearing a Hawkeye pin on the collar of his jacket. I croak out something about the Iowa/LSU Bowl game from last year being terribly exciting, and he tells me he was actually there and enjoyed it very much.

Both doctors decide they can’t miss their chance to poke and prod and feel around in my mouth. They also feel up and down my neck on both sides. Although no one has been able to feel anything by touch, the scans don’t lie.

The result of all of this: surgery, definitely. On the sheet, the procedure is listed thusly.

Semi-glossectomy with CO2 laser; left neck dissection.

In English: I will lose about half of my tongue and all of the lymph nodes in the left side of my neck.

The doctor tells me, when I ask about speaking, that I’ll be speaking a lot better than I am now – I may have mentioned that my speech is getting worse by the day. As I write this, it’s to the point that I really do have to write things down to make myself understood to others, as enunciation is completely out the window. Eating? Well, it will take some practice to get used to not having that portion of the tongue there. I said I’ll wear a bib until I get the hang of it.

From there, it was into the adminstrative maze that is actually getting the surgery scheduled. The scheduling girl tells us that we have to go talk to financial aid before we can schedule things. Why? Because I, like so many other people (especially self-employed people) have no insurance, and thus will be paying out of my own pocket for everything.

So we call the financial aid office, knowing full well that I am in a gray zone: I make too much to possibly qualify for aid, but certainly cannot pony up tens of thousands of dollars at once to pay upfront. We make – well, my mother makes, since I can’t speak – several calls, trying to get someone to understand our position here. Why waste time going through an appointment with the finance office (which we can’t get for another week) when we know we don’t qualify. The smart thing to do would be to skip that step and go speak to someone about making payments, which is what we’ll need to do anyway.

We’re told that we must “follow the procedures”. I’ll mention at this point that the hospital where the surgery will be done is the nonprofit hostpial here in town – that is, they are the ones who take people without insurance and the place that writes off the bills of people who have no intention of ever paying a dime. I’m sure this whole “follow procedures” thing is ingrained into their heads, but when you have someone who is actually trying to make arrangements to pay you, maybe breaking out of that mold for a minute or so would be a good thing to do. Just a thought.

My mom, who doesn’t care for their answers, spends the day on the phone. She finally tracks down someone in the accounting office who lends a hand, and presto! They want a deposit, they’ll put together a payment plan, and we can go ahead and schedule the surgery.

This is exactly what we do.

How many doctors does it take to treat a patient?

Another day, another doctor. This time, another ENT, who is my age.

His first comments were those we’ve come to expect: how rare it is to see someone our age, female, nonsmoker, with this type of cancer. Yes, it is indeed rare. I always thought that if I were to be afflicted with cancer of some sort, it would be breast cancer, since that runs in the maternal side of the family. Then again, I have always charted my own path, so maybe I just had to be different.

More poking and prodding. The doctor runs his finger up the side of my tongue, which is excruciatingly painful. He also feels my gums, around the bottom of my tongue, feels around the back of my mouth, which makes me gag a little, and apologizes the whole time for the pain he’s causing. What a guy.

He then spritzes a vile topical at the back of my throat – the label has the funniest claims on the front of the bottle, one of which says “reduces gagging”. I was wondering what that particular claim was for. Until the doctor put a mirror all the way in the back of my mouth and used a wooden depresser to push my tongue down so he could also have me say “eee” and look down my throat. I’ve made a note that “reduces gagging” means that it will take three seconds instead of one to gag when someone starts messing around back there.

The doctor says for something like this, he’d recommend surgery, with radiation to follow if surgery did not get all of it. He also wants a CAT scan.

Since everything we’ve read about this sort of thing says surgery, and based on the side effects of radiation, we elect for surgery.

The doctor says he’ll need to check his schedule, since he’s leaving town for a week, but that he’ll give us a call and in the meantime, we’re to go ahead and schedule the CAT scan.

A couple of hours later, we get a call from the doctor. He leaves a message with his cell phone number (which shocked the hell out of me), asking us to call him as soon as possible, even if it is after hours.

So we do. He says he checked his schedule, and he would not be able to do the surgery until the first or second week of August (we’re in the first week of July at this point in our story). However, he has spoken to another doctor, for whom he has great respect, and discussed the case with him. They are in agreement that we probably should not wait that long for action. The other doctor is not leaving town, can see us that same week, and can likely do the surgery the following week. He has also been doing this sort of thing for about 30 years and is highly knowledgeable and respected. We agree that we’ll head over to the next doctor after the CAT scan and get things rolling there.

The mask of doom

The first ENT, who did the biopsy and also broke the bad news, recommended radiation followed by surgery if necessary. As I mentioned, the reasoning behind this was because surgery can be so disfiguring.

While we were doing our research, we went ahead and got a recommendation from my primary care doctor for a radiation oncologist, and headed over for an appointment.

The doctor is a local boy – went to school here in town, then headed to Harvard, and came back after finishing a residency at Stanford. Very, very nice guy. Young, too.

Like all the others, he poked and prodded the lesion on my tongue, then stuck a tube down my nose into my throat to take a look around and see if anything looked off. Fortunately, after peeking in there and making me say “eeee” while he looked at my vocal cords, he said things looked fine there.

His question, though, was why radiation first in this instance rather than surgery. We explained the answer given by the first ENT. He told us that in this case, since the lesion is accessible (i.e., on the oral tongue, the part that’s mobile, rather than the base, which is at the back and doesn’t move), his first inclination would be surgery. He spoke to the ENT, and they didn’t really come to any definitive answer, since they’re both experts in their fields but not the other’s.

So we asked for the name of another ENT, and made an appointment with him to get yet another opinion.

In the meantime, we went ahead with the mask of doom.

The mask is one made for patients with head and neck cancer. It’s a form-fitting mesh apparatus used to keep the head in one place during treatments. The form is heated slightly, then pressed down across the face and shoulder area while the patient (me) is lying flat on a table.

For those with claustrophobia – like me – this is an anxiety attack inducing experience. The mask tightens and goes solid as it cools. It is not a fun procedure for people like me, and I thought I might hyperventilate myself into unconsciousness at one point. The techs were very kind though, kept talking to me, and tried to cool it faster by placing cold rags on it. I am convinced that if I do have to undergo radiation treatments, I will need to be slightly drugged while I am in this mask. Did I mention that it bolts to the table right about the ear area on either side?

The radiation oncologist ordered a PET scan. This uses a glucose formula with a radioactive substance contained within it to “light up” areas that may have cancer activity, since cancer cells tend to use more energy than normal metabolic functions. All of this would be more fascinating to me if it weren’t for the fact that I had to wear my new mask during the procedure.

It took three tries and a compromise to get the mask in place – the compromise being that I would only need to wear it for about six minutes rather than 30, because I was having too much trouble having the mask in place. With a little help from one of the techs, though, I managed to get in the most comfortable position and the calmest state of mind I could, and was rolled back and forth through the scanner. With the mask off, and with me being almost motionless, they also did a longer scan of about 20 minutes.

And then I was freed from the mask, and once again, we waited for results and our next appointment, this time with the new ENT.

Reflections on gardening, cooking, and life