Its been a year…

It was one year ago today that I underwent surgery for an oropharyngeal carcinoma that was located in my right tonsil.

What they did:
The surgery was one of the ugliest, most invasive procedures that I could have imagined being performed on me. It involved removal of the tumor and a clearance margin of 4 centimeters (or was it 8 centimeters?) around the tumor site, and the reconstruction of that area.

There were at least two teams working on me, and the operation lasted almost eight hours. You know, I just realized that I’ve forgotten how much time they actually took. They had given us estimates that ranged from 8 to 14 hours… I need to look that up again.

Okay, so I can’t give you a sequence to the surgery because of the two teams, but here’s a summary of what they did;
· They popped out a tooth at the front centerline of my jaw. Then they split/broke the jaw at that point. They cut down through the lip and through the floor of the mouth so that the jaw swung open sideways; the technique is called a mandibular swing.
· They then pulled the tongue forward and removed the tumor and the tonsil. They took, as part of the clear margin, the right lingual tonsil and a portion of the base of the tongue.
· It’s not good to leave huge gaps in the structure of the mouth and throat, so they filled in the area with a piece of muscle taken out of my left forearm. Why the forearm muscle? Apparently it’s been proven to ‘learn’ the functions of the tongue segment that it’s replacing.
· They also took a chunk of the radial artery in my left forearm to rebuild the vascular structure at the back of the throat/tongue to ensure blood flow.
· A skim of the left thigh skin was taken to replace what was taken from the forearm.
· They transplanted at least one saliva gland to a position on the lower jaw to save it from the radiation treatments. Radiation will incapacitate saliva glands. A platinum wire was placed in the jaw to mark its spot; basically a ‘do not radiate’ sign for the radiology oncologist.
· They did a neck dissection and removed all the lymph nodes from both sides of my neck. When they did the dissection, they had to ‘manipulate’ the spinal accessory nerve.
· They put it all back together again. And yes, they put a plate into my jaw to hold it together. And no, it doesn’t trigger airport metal detectors.

Compared to last year;
On the morning of the surgery, I weighed in at 208 lbs. This morning I weigh 161.2 lbs. For reference, I weighed 165 lbs. on my wedding day twenty years ago. So, in a year, I have a net loss of 46.8 lbs. Not a weight loss program that I’d suggest. It took me twenty years to amass that much weight; its not going back on quickly.

In theory, I’m still the same height. The challenge is that I slouch dreadfully. The damage to the spinal accessory nerve has caused the right shoulder to pull forward. I still tend to let my head droop. Working at a desk all day is contributing to the droop and the slouch.

My hair has returned, sort of. It seems really thin at the forehead hairline. Well, maybe it was that thin prior to the surgery/chemo… I had a quick look at a bad photo of me at K.’s wedding, and it did look a little thin. But, what hair has come back is darker, and the hair on the back of my head is really wavy. Too bad it wasn’t that wavy when I had long hair twenty years ago. And the less grey is good!

My beard, on the other hand, is really causing me some consternation. The beard is thinner on the right side of my face than it is on the left side. Both sides are thinner than it used to be. My mustache is fine. I have grown a goatee to hide the chin scar, which doesn’t look too terrible, if you don’t get too close. The beard that I can grow is almost entirely white. I mostly stay clean shaven, with the exception of the mustache and goatee. I do miss my beard.

The skin on my face and neck tends to be dry, much drier that it ever was before. The area of my eyebrows has become seriously dry to the point that I spend extra time rubbing moisturizer into the brows to stop the flaking.

Inside the head, things are definitely different, and weirder, and I’m not talking about how my mind now works. My teeth are migrating, compensating for the single tooth that was taken out of the centre of my lower jaw. In fact the gap has closed considerably. The bone break no longer ‘hurts’, but I can still notice it when I bite down hard. Chewing is so much easier now, although when I open wide, it still is not as wide as pre-surgery. Apparently that is because of the radiation rebound effect on the musculature. So I try to remember to stretch regularly, usually while driving which is probably very disconcerting for the drivers in opposing traffic.

There is some sort of muscle/tissue problem inside the mouth, along the right side. The area of the mouth floor is tight and not as flexible as the left side. But, remember, the surgery took a chunk of the back, right side of the tongue, and they did actually split the jaw and slice through the tissues in the floor of my mouth somewhere.

And mentioning the tongue… it has about 80% of the flexibility it did a year ago. It also feels a bit shorter, in that I can’t quite reach the areas on my teeth and gums that I used to be able to. It’s pretty scary how much you use the tongue, and for what. It’s not just to speak. The tongue plays a huge part in how you chew and swallow. And it autonomically (no, not automatically) wipes debris form your teeth and gums. The continued lack of flexibility prevents me from reaching all the way back to swipe my back teeth to clean them. And it feels weird all down the right edge of the tongue to the tip, sorta like the electrical charge that one feels when touching a 9 volt battery to your tongue to test it, only much less intense. But all in all, the tongue is so much better than even two months ago. I have high hopes for its near total recovery. There’s just the issue of the dryness.

The dryness of the tongue, which does begin to affect my speech after a time, is the direct result of the dry mouth syndrome brought on by the radiation damage to the saliva glands. They will never repair themselves, so I’m resigned to working with the one that was transplanted. I am experimenting with the drug pilocarpine to stimulate the last gland to Herculean effort. It will never be enough, but hey, every little bit will help.

Without the saliva, eating is a chore. I take a sip of liquid with each bite that needs to be chewed. And then I can swallow. Yes, the swallowing is pretty darned good, at about 85% of the original capability. Take a look, if you can find it, at the blog entry with the fluoroscopes of the swallowing reflex. It really isn’t as bad as I complain about… if I am diligent about the liquids. I eat with water and milk. Fruit juices tend to dry things out dramatically. Wine, well, it depends, but wine tends to have the same effect as fruit juice. Scotch, for some reason, is just fine. Thank goodness. But you don’t drink that stuff a tumbler at a time, unfortunately, which might help to give me the confidence to sing in public. At the moment I don’t sing as much as I croak. I don’t see that changing. But I can speak, and so long as I keep the tongue, and therefore the mouth hydrated I can speak for a long time.

The only other internal effect is my hearing. Now the change to my hearing was not as a result of the surgery, which in theory is what today’s lengthy note is about, but was a casualty of the chemotherapy. Cisplatin, the chemo drug, wiped out my ability to hear a particular frequency range, and gave me tinnitus, most pronounced in my left ear. I have hopes that the range will return; it’s already started coming back. But I suspect that I am stuck with the tiny glockenspiel and the constant low level white noise.

Back to the exterior: Complete range of motion in my neck has returned, although radiation rebounding continues to tighten up the tissues. I am numb in a band that extends from a point the size of a finger tip just under the left ear, forward under the chin at about three fingers width and around the neck under the right ear where the numbest flares up into my scalp to about three fingers width above, and including the right ear. It also covers an area out onto my right shoulder to the top of my arm at about a hands width. This is a major improvement! And mobility of the shoulder/arm is good and getting better.

Scarring will always be an issue. Vanity will determine how much of an issue at various points in my life. The doctors have said that the radiation and chemo therapies have effectively aged me by ten years. And yet I’ve been told that I actually look like I’m ten years younger. Okay, so we like that kind of stroking and we work with moisturizer to keep the skin looking its best and try other strategies to cope with the scars. The centre-of-the-jaw scar is covered by my goatee. The scars on my neck from the dissection will eventually get lost in an old man’s neck, but for now they’re really not that noticeable. The asymmetrical bulge of the transplanted saliva gland is the most annoying thing. I must admit that I have started wearing ties a lot, so my shirts are buttoned at the collar, saving our clients from discomfort.

My right forearm has the ugliest scar. It’s a three inch by six inch rectangle of tissue missing from the area where one wears their watch. Its just plain ugly. And the long thin scar that runs up to my elbow joint pointing out where they borrowed the vein from is almost as bad. I never did like short sleeved shirts…

But I almost always forget the scar on my thigh where they skimmed the skin to rebuild the forearm with ‘cause its virtually non-existent at this point.

And I’m thin. Really thin. Did I mention that?

One thought on “Its been a year…

  1. everything you have typed here is identical to my dissection and post op issues..the tightness to the area the problems with the mouth and limits to what you can do with the cancer is adanoid cystic carcenoma which is quite rare and i would be happy if there is anyone out there with the same cancer as mine to contact me or leave a note on here for me to reply to.i was diagnosed 2yrs ago after a lump in my neck which had been there for 2years.After much badgering at the local doctors after so many problems with eating and them saying its just a blocked duct and so many antibiotics over the 2years i lost count they finally decided to take the lump out for biopsy.When i got the results it was like a slap in the mouth as you can imagine especially when they told me with the tumor being there for so long they are unsure how far its spread.So i had the full neck dissection and the radiotherapy.Got the burns to the face which were quite extensive,constant thrush in the mouth and dryness which could never be overcome i got through the treatment.I have 3 monthly check ups and recently have found 2 more growths in the neck once again which are under investigation so fingers crossed..I still have plently of problems from the last op but carry on and never let myself get fed up that would be a downwards spiral of a route im not willing to go down.I have my family my 2 children and extremely close friends to help me and that means the world to me.

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