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.
“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.
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.
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.
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.
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 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.
So how in the world did we go from point a to point b?
A little of the past before a little of the present is in order.
Back in April, I had noticed a small sore on the left side of my tongue. It looked like a regular old canker sore, which I’d gotten before from time to time (although rarely on my tongue). I hadn’t had any for quite some time, but figured it would go away on its own.
It didn’t. In fact, it got a bit bigger, and the area around it became red and inflamed as well. Since I was headed to the dentist to get a cracked filling replaced, I asked him about it. He told me it looked infected, gave me some antibiotics, a dental paste (sort of like liquid gauze), and told me to alternate rinsing with salt water and Peroxyl. Not better in a week? Go to the doctor.
Well, it wasn’t better in a week, so I headed to my primary care doctor. I had to go anyway to get my cholesterol rechecked, so had him take a look at the sore, which had grown a bit bigger. After looking at it, he suggested a trip to an ENT. He did point out that my risk factors for cancer in that area were quite low (which I knew: never smoked, never used any other tobacco products, not a big drinker, and no history of oral cancer in the family, although breast cancer runs through), but they worry about things that don’t heal as they should.
So, off we went to the ENT. He took a look, and decided that we should try a topical antisteroidal to see if that would help. None of us, of course, considered cancer as a primary factor. If it wasn’t better in a week, I was to return for a biopsy.
It wasn’t better. In fact, it continued to grow, and the ulcerated part also grew larger. So, biopsy time.
If you’ve never had the joy of having needles stuck directly into your tongue, you’re not missing anything at all. First, a small topical gel was applied to the affected area to numb it a little. He then injected novocaine directly into two different places in my tongue – two different areas of the sore, I should say.
About five minutes later, he took several small samples from the area. Even with the novocaine, the pain was still quite intense. They sent the samples off to the lab for the pathologist to review, and told me to hang tight while we waited for the results.
Four days later, they called me into the office.
“The pathologist says it doesn’t look good.”
The pathologist, in fact, wanted another set of samples, deeper into the tissue, to confirm what he saw in the first sample. So we went through the procedure again, this time with a pain level five times the first time, as the doctor dug out a core sample from about the center of the sore. They then sent me home, told me to hang in there, and we waited for the results to come back.
And that, my friends, is how we ended here, with a diagnosis that surprised every health professional we’d seen to that point (plus all the others we’ve seen in the meantime) and shocked the hell out of me and my family.
“The latest biopsy did come back as cancer.”
Those are definitely not the words you want to hear. Now, admittedly, after dealing with a sore on my tongue that wouldn’t heal for about three months and that was surrounded by a reddish area that kept growing, this was in the back of my mind as I made my way from my dentist to my regular doctor to an ENT (ear, nose, throat doctor). But oral cancer, in my tongue? Me? A lifelong non-smoker who had never taken a puff of anything, legal or not, and who had never used any other types of tobacco products at all? This is the sort of cancer that most often strikes older men with three pack a day habits, not females under 40 who have never adopted that habit.
“The doctor recommends radiation, followed by surgery if necessary.
When I asked, the reasoning was that surgery on the tongue or in the mouth is disfiguring and can have a large impact on things like speech and eating, especially given where the tumor on my tongue happens to be (left side, about in the middle from front to back). Radiation can shrink tumors to the point where surgery afterwards can have less of an impact than initial surgery can.
However, conventional wisdom is surgery first, then radiation if there are areas missed by the surgery. Ever hear that phrase “the margins are clear”? That’s what post-surgery pathology is looking for: no evidence of cancer cells around the perimeter of the removed tissue, which generally indicates radiation is not necessary, although consistent, regular followups are.
Besides, my speech had been degenerating for a couple of months since the tumor continued to grow and is ulcerated in the middle, making it very painful to talk. And swallow. So I sound like someone who might be a little mentally challenged, and the only way my speech could be any worse would be if I couldn’t speak at all. I can’t speak on the phone at all right now, and it’s getting pretty tough for people to understand me when we’re face to face.
So, off we went for a couple of other opinions. I haven’t written about this previously, because I’m a fairly private person, all things considered. But there’s a dearth of sites about oral cancer compared to things like breast cancer, so I thought I might give people like me, who are searching for others’ experiences, anther place to land if they, too, are given the news that there’s something growing on their body that shouldn’t be.
Years ago, I never cared for guacamole. That’s probably because every version I’d had was processed into something resembling the stuff that could be found in a baby’s diaper after a particularly bad intestinal bout.
However, I sampled some made by one person that wasn’t quite so processed, and found that it could be quite tasty. I’ve modified it a bit, as hers tended to be a little too watery if it sat for awhile, and I like mine a bit stronger, so I use more red onion and garlic. This is a great taste as you go kind of thing, and the amounts can be adjusted to suit whatever tolerance you have for the various ingredients.
Primo guacamole (serves about half a dozen, or 2-3 hungry people, or 1 person who doesn’t like to share)
6 slightly soft Haas avocados
2 medium tomatoes
4-6 cloves of garlic, finely minced (depending on your tolerance)
1 – 1 1/2 cups diced red onion (ditto)
Fresh cilantro, minced (to taste)
Freshly ground black pepper (to taste)
Place the avocado meat in a good sized bowl, and mash it a bit with a fork. Personally, I like my guacamole a little chunky, so some diced-sized pieces of avocado are always welcome. Squeeze lime over the avocados immediately to prevent browning.
Quarter and seed tomatoes (this will keep it from getting watery on you). Chop roughly and add to avocado mixure, stirring gently to combine. Add remaining ingredients and stir a bit more. Give it a taste, make any spice adjustments, and enjoy.