It Might Get Messy

I’m a little fuzzy on what went down my first week in the hospital. Wait, let me rephrase that. I have pretty much no idea what happened that week. I spent it cycling between screaming pain and narcotic bliss, with a constant overlay of abject terror as the claustrophobia that comes with having to breathe through an entirely new orifice carved in my throat hit my addled brain.

I do know the basic outline. First thing they did on Monday was slice my tongue loose from its malignant moorings and toss it into the “medical waste” bucket. Then they hacked off a chunk of thigh muscle, whittled it into a tongue shape, and grafted it into my throat. 

You would think a piece of thigh muscle intended to replace a tongue would be relatively small—say tongue-sized and shaped. But you would be wrong. The chunk of meat they cut from my left thigh ran from knee to waist. The stitches, now almost a month old, are impressive. The hollow groove leftover is massive. Here, see for yourself:

Awesome, no? But it doesn’t end there. Not by a long shot. 

Fastforward from Monday to that Friday. By now it is clear that the “tongue” graft is failing. And fast. The doctors caucus. They decide to scrap the whole concept. This entails assembling a surgical team on short notice. Surgery is scheduled for 7 pm. It ends sometime after 11. I’m a mess coming out the back end.

Consider the geometry of this endeavor. Things were pretty straightforward when it was just a tongue swap. The idea was that the graft would strengthen, take over basic tongue functions like preventing me from drowning in my own spit, and make the tracheotomy irrelevant. Now, however, we need some anatomical origami. They filleted the left side of my chest, cut a slit in my neck that opens in my throat, folded the chest flap up so that my mouth and nose are cut off completely from my airway, and closed everything up. 

I’m not crystal clear on this folded-paper model and how Tab A fits into Slot B. But I do seem to have residual evidence of the procedure. This is in the form of two enormous tunnel-like voids, one on each side of my neck. Here’s a couple photos:

Two more recovery weeks in the hospital got me home, and today I had my first post-treatment checkup with Dr. H. He’s comfortable with my overall condition (I’m still struggling to breathe, but that’s my problem at this point). He drained a bedpan full of blood from a large hematoma on my thigh, and removed the surgical drain which was failing to take all that fluid. 

Then he got to the point. We are running low on treatment options for residual malignancies. He opened the conversation by announcing that we are beyond long-term “cure” of my cancers. Now we’re dealing with management, and possibly simply with symptomatic management.

There are three presently known or suspected carcinomas in my body. There’s a tumorish surface on my sinuses above where the tongue malignancy was. There’s a small piece of tissue that the surgeons apparently observed slipping away into a lymph vessel. And there’s two spots on my left lung. These are presently of unknown standing. They seem to have increased in size (bad) but did not take up the radiolabeled sugar at my last PET scan (good). If the lung spots are actually cancerous, treatment for the other spots is obviated. If not, Dr. H has some alternatives including clinical trials of various therapies. My throat cancer is so rare in nonsmokers that it is of scientific interest.

Next step is an MRI of my lungs to try to ascertain what, in fact, the visible spots are. Personally, I have some hope about those bad boys. Childhood allergies and asthma, years of norepinephrine dosing for same, periodic pneumonia, chronic bronchitis, etc. involved decades of physiological insults to my lungs. Hell, I’d be surprised if there was NOT some record of all that in my lungs. And not necessarily cancerous.

We’ll see, starting soon. Updates to come. Rest assured, as I find stuff out, I’ll pass it on to you. Love to you all!