Voenix Rising

It’s been a full year since I underwent a split-lip manibulotomy to remove the tumor on the back of my tongue.

Knowing what I know now, would I have still done it?

Probably not. Well, maybe.

I’m 68 years old. According to Cindy, my nurse friend (whom I trust more than any surgeon), untreated squamous cell in the pharynx has a ten to fifteen year survival rate. My Mom passed at 78 from Alzheimer’s; my dad at 87 from a heart attack. You do the math. Yeah, things might’ve gotten nasty toward the end of that timeframe if the cancer spread, but looking back over the past twelve months, there are definitely days I think I should’ve risked it.

That being said…

I’ve made my peace with the fact I may never be able to chew and swallow real food again. The G-tube is an annoyance, but not an insurmountable annoyance. I’ve found lots of ways to augment the plain vanilla nutritional formula I’ve been on since last September (I’m eating more fruit now than I have at any other point in my life) and I’ve learned that anything can be put in the Ninja and pureed if I’m willing to put in the work. Since I do somehow still get a hint of flavors even though the food is reaching my stomach without passing over my taste buds, I can live with that. But most desserts and snacks are things of the past. (Yeah, even they can be pureed, but the cost-to-benefit ratio isn’t worth the trouble.) That’s why I still get pangs when I see Ben grab the onion dip from the fridge and a bowl of chips from the pantry or when he brings home a box of cookies.

What I miss most about not eating is the social interaction that dining affords. For instance, there’s a great little Mexican hole-in-the-wall restaurant out by Cindy’s house where we used to meet up for lunch. We’ll never be able to share that again—at least not in the same way. Sure, we can still get together for lunch and I can order my meal to go for mash-up at home later while watching her eat, but where’s the fun in that? I’ve done that with some family gatherings, and it’s just not the same. It’s so awkward that now I’ll just not go rather than subject myself to it.

Now as far as the followup immunotherapy goes…

Back in 2003 when I was diagnosed with laryngeal cancer, my options were radiation or chemo. The doctor didn’t want to do surgery unless it was absolutely necessary in order to preserve my ability to speak. After much discussion, I decided on radiation as it seemed to have the fewest side effects of the two options.

Little did I know. But I digress.

A year ago, my first thought after hearing the surgery described to me was a big NOPE and go straight to radiation. I knew that twenty-two years ago I’d asked if they could do radiation twice in the same location should my cancer return, and the response was an emphatic NO. But two decades of progress had passed and it was worth asking the question again. And this wasn’t the exact same location…

I met with the radiation oncologist prior to committing to the surgery and he said that yes, he could do the radiation in the same area again, but it carried the risk of—as he so succinctly put it—”blowing out your carotid artery.”

So that was another big nope. Radiation was off the table.

I flat out refused traditional chemotherapy immediately, having seen and heard too many horror stories over the years. And my oncologist felt that the third option—immunotherapy—alone wouldn’t be enough to get rid of the tumor. [After seeing what six months of immunotherapy has done to my body, I can’t imagine what the full course—nearly a year—would’ve done.]

So surgery it was, saving the immunotherapy (which sounded pretty benign in comparison to chemo, i.e. “the most common side effect is a skin rash”) for the followup treatment.

So again…knowing what I know now, would I have done the followup immunotherapy?

Abso-fucking-lutely not for the obvious reasons you’ve all read about in other posts.

I would’ve said, “Let’s wait six months after surgery and do a PET scan before moving forward with anything.” And as we now know, in March my PET was perfectly clear. In all honesty however, I do have to ask was that because of the six months of immunotherapy I received or in spite of it?

Now, one year on, the place on my wrist and forearm where they took tissue for the flap used to patch the hole created at the back of my tongue when the tumor was removed is almost looking normal again. The spot on my thigh where they took a skin graft to cover the spot on my wrist has also become nearly indistinguishable from the surrounding area as my plastic surgeon promised it would.

I still have no feeling in my lower left jaw and lower lip and probably never will since that particular nerve had to be severed as part of the procedure. 

While I lost way more weight than I would’ve liked when I was initially put on the g-tube, over the last month or so with the changes I’ve made to my diet, I’ve put back on about 12 lbs. and I’m now at my ideal weight. Hopefully I can stay here so I don’t have to go out and buy all new clothes again.

The pemphigoid rash is slowly coming under control. I’m on my second-to-last week of prednisone, currently down to 20mg/day from 70mg/day at the start, and on the increased frequency of Duplixent.  Every morning I still wake up to discover a few new blisters have formed overnight and there are afternoons I want to scratch all my skin off from the itchiness, but it’s improved significantly from where things were a month ago.

My only fear is that once I’m off the prednisone completely, like last time, the blisters will return in force. On the other hand, I’ve now been on the Duplixent longer and at double the dose that I was when all this first flared up, so I’m hoping that will prevent—or at least mitigate the severity—of the rash if it does return. Thankfully I’m seeing my dermatologist a week after my last dose of prednisone, so if the blisters do return, the timing couldn’t be better to address them. (I have a feeling I’m going to be on the steroids until the fucking Keytruda finally works its way out of my system completely, and according to the literature, it may take up to nine months for the Duplixent to fully do its thing.)

Fun times, right? As I tell people, this is not how I envisioned retirement. 

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