Cancer Surgery, From the Outside In
Background (the short version)
My mom was diagnosed with an ACC tumor in and around her right sinus/nasal cavity/eye socket in December of 2014. A month later, I was sitting, nervous and half-asleep, at the foot of her bed in a pre-surgery room at MD Anderson Cancer Center. I started typing on my phone, logging my stream of consciousness.
I continued on-and-off for four days.
We arrive at a seemingly empty MD Anderson. Much different from our day of pre-op appointments Thursday when I couldn’t even get into the two closest parking garages.
We make it to the 5th floor, elevator E, surgery check in. We’re surprised to come off the elevator and find a line with at least 50 people in it.
Checking in was very fast. We’re in Mom’s private pre- and post-op room. Chairs for family members and everything. An impressive (and short) nurse’s assistant shows us in and makes us feel welcome and taken care of.
After a visit from the chaplain to invite us to prayer service later, Mom’s first nurse arrives. She makes sure we all think we’re here for the same thing. The system says maxillectomy, which a quick Google search shows to be super scary. Jitters.
She’s scheduled as an outpatient, so we’ll be in the outpatient waiting room on the second floor.
We’ve had a visit from one of Dr. Weber (the surgeon in charge)’s fellows who marked the right side of her face with his initials, and a friendly nurse’s assistant who took her vitals.
Compression stocking time. No blood clots for us.
This won’t be her post-op room apparently. We’ll learn that later. The surgery should be in the neighborhood of 2 hours. Two of us (Liz and I) will be allowed to visit for a few minutes about 20 minutes after she’s out. After that I’m not sure how often and for how long well be able to hang out.
Visit from anesthesiologist. Lots of worries about her history of nausea but she seems very confident. Mom’s going to get to try oxy-codone after the surgery. Thankfully they’re much more proactive about nausea these days than they used to be.
“Going home and cuddling with Charlie sounds pretty good right now.”
She’s not cold, which is a minor miracle. They’ll be taking her back at 7am. Should be over by 10.
Pre-op visit from Dr. Weber. He re-stated all the risks and the extent of what he expects to have to remove. He is direct, confident, and calm.
She’s in surgery and we’re on the 2nd floor in the outpatient waiting room. Here’s the entourage following her back. Our first update won’t be till 10am if all goes well.
Whataburger. Texas has its perks.
Waiting is hard.
The waiting room is very well organized. They know we’re here and which patient we’re attached to. The attendant just came by and let us know they haven’t actually begun the surgery yet. She’ll update again when they begin the incision. It’s kind of a let down — we thought she might be close to done by now.
The nurse in charge of posting to Cancer Facebook or whatever forgot to update and so we have just now found out surgery began at 7:28 and the incision was started at 8:03. She’s doing well; everything is normal.
I’m very tired but napping is difficult.
I had tentatively planned on doing some work today; that might be impossible.
Nothing yet. Tinges of worry creeping in.
A nurse liaison just came to give us an update. She’s doing “great” apparently and they’re nearly done. They are done sending samples from the margins to pathology for testing and began installing the metal plate just after 10.
Incidentally, this is the first we’ve heard about a plate, so we’re tense as we wait to hear exactly how much of her facial bone structure they had to take. There is a plastic surgeon in there assisting so hopefully he’s helping make sure she keeps her classic beauty intact…
Dr. Weber just left. She did well in surgery. They had to take the structural bone next to her nose and under the eye, which he said will lead to “some rotation of the nose.” Yikes. The eye guy wasn’t able to reconstruct the tear duct this time. So it looks like she’ll have at least two follow up surgeries in her future, in addition to the radiation.
The plate was not what we thought. It was inserted to give her eye muscles something to attach to so that right eye doesn’t drift and appear further part from the left eye than it should be.
Soft tissue margins were clear, but it takes some time to decalcify the bones to discover whether the bony margins had any cancer left.
Microscopic remnants of this type of cancer along the sheathes of nerves are common, so follow up radiation is important and will begin in 3–4 weeks.
She’s going to be disappointed to hear she’s not “done” with surgeries. But the focus for us now will be making sure she doesn’t end up feeling sick from the pain meds.
I’ll be adding at least one photo so prepare for that if you’re following along.
We’re in a room, surrounded by people talking about cancer and surgery and reconstruction and recovery. All of us in the same boat, all retreating into the comfort of people we know and love.
She’s out, woozy, and resting. Looks great, considering. She’s not in pain according to her, there’s a machine massaging her calfs, and she doesn’t feel nauseous at all. Fingers crossed that continues.
She’s been released from PACU (post anesthesia recovery unit) pending an available regular room.
I went outside to take a walk and get some fresh air and ran into this dude in a ridiculously awesome leisure suit.
She is still only reporting a “1 on a scale of 10" amount of pain, but has a button she can push for hydromorphone. Fingers crossed she doesn’t react badly to it.
The red things coming out of her nose in the photo above are just the strings so they can pull the gauze out of there later. Overall she looks pretty good. Anxious to see how the swelling progresses in the next day or two.
Feeling relief and dread about how miserable she’s going to be when she stops being super out of it.
Surgery is crazy.
Okay, I’m officially #pissed. We spent all day Thursday and most of this morning talking to an endless stream of hypothetically very smart people about her history of narcotics-induced nausea, actively planning with these people for a protocol of proactive, prophylactic anti-nausea medicine. Then just a minute ago, after battling nausea for a while and then vomiting, the nurse on duty told us she did not have orders for any anti-nausea medication in the system.
She’s sleeping again.
I’m sitting in the dark, listening to her snore. I woke up after a couple of hours’ sleep to get here by 5. Traffic was pretty awesome this time of the morning though.
The ENT team rounds (goes around checking on and adjusting care for patients) between 5 and 6 every morning and then does new surgeries starting at 7:30. We have a couple of pressing questions and so I wanted to be here to ask them.
The third act yesterday was good. After the vomiting episode, she has been on Zofran every 8 hours for nausea, the anesthesia has completely left her system, and she is nearly her regular self. She still presses the “put sleepy fun time juice into my veins” button a lot less than I would; she was dosing herself with IV hydromorphone less than every 30 minutes when we left last night.
She has her phone next to her and can use it so if you’ve been wanting to text go for it.
The two issues we’re looking for guidance on are: she is having double vision, and her upper lip is completely numb.
The double vision is hard to deal with but seems likely to be caused by all the swelling, and can probably be corrected with glasses anyway if it doesn’t subside. Double vision means her brain can’t combine the feeds from both her eyes into one image. Right now the pictures are just too different. I’m much taller and thinner through one than the other. I recommended keeping that one if drastic measures are necessary.
The lip, though, is potentially a real bummer. If it’s nerve damage, she might have to go the whole rest of her life feeling like she just got home from the dentist. Upper better than lower though, I suppose. No drooling, just an annoying amount of difficulty putting lipstick on.
She loves her lipstick.
Well, no doctors yet. Hospital life is involuntary dependence. You sit around, needing other people to deem you important enough to merit attention and action so you can accomplish what you’re here to do (get better). It makes you realize what a gift self reliance is, and how dangerous the kind of voluntary emotional dependence we sometimes allow ourselves to fall into is.
One side effect of the swelling and super-hydration due to the IV fluids: no wrinkles.
“It’s like getting to try out collagen injections. Cool.”
Sarah and I are waiting to give blood. No specific reason other than we just ate lunch and it seemed like a good idea.
Mom is feeling pretty good, although activity makes her tired.
We spent the last couple of hours down at the ophthalmologist’s office talking about options to deal with her double vision. She got a pretty cool eye patch.
We’re home. Well, our temporary home, anyway.
It seems like the stretched nerves in her face are slowly coming back online, which is exciting but also means she’s feeling some semblance of true surgical pain for the first time, starting with the bones.
She’s on Tylenol and Tramadol, which is a mild opiate that most people would scoff at but which makes those with overly sensitive opioid receptors pretty happy.
She still only takes the Tramadol at night when she’s ready to sleep. Pretty tough cookie.
We’re at Dr. Weber’s office in the Head and Neck Center at MD Anderson. She had some packing in her nose that needed to come out (remember the “tampon strings” coming out and taped to her cheek?).
The doctor came in, sprayed in some lidocaine to numb the area, and left us to talk while it took effect. We were discussing the weather and she suddenly started feeling nauseous, then woozy.
She started to breathe shallow and moan low in the same way she did before the seizure in New Orleans.
Liz lifted her legs, handed them to me, and called for help. A bunch of people came in, rushing in. They laid the chair back, and got a pulse monitor and blood pressure cuff on almost immediately.
She never actually lost consciousness, but it was pretty tense for a while. I was sure she would start seizing again.
We’re in the ER now. Her blood pressure was very low during the first episode — something in the area of 65/40. It slowly rose, but never above about 105/60. And as soon as she sat up, it would drop again. So they decided to send her down to the ER to get some IV fluids and be observed.
Of course, as soon as we got down here a couple of nurses were arguing with each other within earshot and that brought her pressure right up to 124/65.
But, we’ll probably be here for at least a couple of hours, and there was no seizure.
That’s twice in a row now that Lidocaine was given just before an episode like this, so that’s becoming a pattern that probably merits some attention.
After writing that last entry on Day 4, I essentially checked out. Whatever energy I had been using to coalesce the insanity transpiring around me into coherent thoughts ran dry, and I regressed into emotional survival mode.
Things were getting better for my mom each day, but I had nothing left.
I returned to Bozeman on Saturday, leaving her in the care of Sarah, my sister-in-law, in a borrowed condo.
As of 3 weeks later, she still has double vision, but can read and use computers without issue using a combination of looking downward and an eye patch. The numbness is better but not completely gone. She’s been to several follow-ups, and has declined chemo as a way to increase the odds of success by 1–10% in exchange for triple the pain and complications of “regular” radiation.
The photo you see here is a custom splint they create to keep people from moving when they do radiation therapy in the head and neck area.
Radiation starts March 2, and goes through April 10. There’s microscopic cancer cells in her bones and nerves, and it has to be eradicated.
You can follow along with her at (the best URL for a cancer story, ever) lifesfunny.com.