Editor’s note: We should apologize for not having posted a bunch of stuff that’s happened. We may eventually go back and fill stuff in.
Editor’s follow-up note: Let’s be realistic. That will never happen. You should move on.
Okay, let’s get you up to speed. Here are, literally, the bullet points.
- In December 2014, Mom (Sarah Higgins to most of you, Nana to a select few) went into the hospital near her home in New Orleans, LA to have a minor outpatient surgery to alleviate some persistent sinus blockage problems. The surgeon took a biopsy of the offending tissue because it was pretty weird looking. A couple of days later, she was diagnosed with an Adenoid Cystic Carcinoma tumor in a secretory gland in her sinus and shit got real.
- In late January 2015, she had surgery to remove the tumor at MD Anderson Cancer Center in Houston, TX. It was surreal and traumatic. ACC is a beast, growing and traveling along nerve sheathing, so they had to remove a good chunk of her underlying facial structure and nerve fibers. You can read my account of that experience here.
- Her right eye socket was compromised and she developed vertical diplopia (double vision). This sucked.
- In March 2015, she completed 6 weeks of radiation therapy at MD Anderson. She did not tolerate it well. She threw up a lot. The radiation aggravated and deteriorated her already obliterated facial nervous system, causing severe long-term nerve pain. It also sort of melted away most of the delicate latticework of bone and fascia that was holding the right side of her face together, and it started to cave in. This is not an overly dramatic characterization.
- Through all of this, she struggled to find pain meds that worked without causing her to violently vomit because she’s allergic and/or sensitive to most narcotics. Yay!
- After the radiation finally stopped doing its thing (radiation therapy keeps radiating things for months after treatments stop), she returned to MD Anderson for a major reconstructive surgery in October 2015. She was very excited. It was always presented and accepted as the light at the end of the face cancer tunnel. You can read some of my notes/ramblings from the day of that surgery here.
- This surgery was even more traumatic. They took bone, muscle, blood vessels, and skin from her thigh, skull, clavicle, and neck, and rebuilt her cheek and eye socket. It lasted all day. It was presented as a success.
- SURPRISE! As it turns out, one of the surgeons in this reconstructive surgery overstepped his experience, decided to take charge of some things he didn’t actually know how to do, pushed aside the expert in the room who was there to do them, and essentially fucked it all up. Since then, all the work done in that first reconstructive surgery has been lost. Her eye socket caved in, to the point that she cannot close her eyelid. Her nose points almost sideways. It sucks. She still hurts.
- In August 2016, one of her monthly full-body scans revealed a suspicious something wrapped around the nerves at the base of her skull. Her main oncologist/surgeon at MD Anderson concluded the cancer was back. She decided not to go through chemo or radiation again. We started to plan for a short runway.
- Two days later, an actual radiologist read the scans and concluded it was nothing to worry about right now. Thanks for the super-fun false alarm, Dr. Fucknuts!
- Given that her cancer does not appear to have returned, her second reconstructive surgery, to re-do what was supposed to have been done in reconstructive surgery #1, is on. Different team. (Except for the one expert guy who was pushed aside the first time. He’ll be there to make it right.)
Okay, so you’re all caught up. The re-reconstruction is scheduled for tomorrow morning, Wednesday, September 7 at around 8:30 AM at Methodist Hospital in the Texas Medial Center. We report there at 6:30 AM. It should last approximately 14 hours, so she should be done approximately 10:30 PM tomorrow evening.
We took some notes during the pre-op appointments today. I’m putting them here for you so that
A) You can pass this info along to anyone else that might be interested, and
B) I don’t have to say all of this to you the next time we talk, because I will be tired and you won’t seem worth it 😉.
Notes from the Pre-Op Appointments
This is the first of a series of surgeries. This is Chapter 1: Building a Floor.
There will be an incision about 12” long on her right shin.
They’ll take a chunk of the shin bone, including fascia, muscle, and potentially skin.
It’s the full width of the shin bone, and about 4” tall. It’s not full depth, so the shin bone will regrow/repair itself.
If they only take bone, she can bear weight on the leg in 3 days and start rehab. If they take fascia, blood vessels, and skin, it will be 2 weeks until rehab and standing/bearing weight.
They won’t take muscle in this surgery. They also might take skin from the clavicle or upper eyelid.
IF they get in there and decide they can rebuild the nose structure during this surgery, they’ll be making a relatively small incision and taking piece of her rib to build it from. This could also be reserved for a future surgery.
Her eye socket will be made out of a porous polyethylene.
They have a fully realized 3D model of her skull they’ve been using to plan this thing.
The lead surgeon has been literally dreaming about this surgery.
He self-described it as the super bowl of his career.
He is from Saskatchewan (Canada). He is the one Blue Cross is threatening not to pay. He said something to the effect of “I don’t even care if I get paid for this surgery.” He also expressed interest in staying in the Nye cabin as a barter.
Plan is ICU for 2 days, followed by post-surgical for 5 days.
She’ll have a central line (like a a crazy permanent IV into your jugular vein) instead of regular IVs, so no chance of the problems with painful reactions to IV drugs she had last time.
They’re going to beef up her cheek a lot so it will be big and puffy after this surgery. This is because it will probably atrophy some between this surgery and the next one. She’ll also have tissue stuffed behind the eye socket to push it out a bit.
OVERVIEW OF CHAPTER 1:
– Use shin bone to build a new cheek bone, so face will stop sinking/shifting
– Cheek will be overfull and puffy
– Eye will be further forward
– This is the structural rehab – lifting the house and pouring a new foundation. Future surgeries will put up drywall, lay hardwood, paint, light fixtures, tear ducts, etc.
P.S. (Please note that it looks like 3 starfish are trying to eat mom’s brains in the photo, above. They’re fancy brads holding things together where they took bone grafts from her skull during the failed surgery in October.)