Tuesday, December 6th, 2016
It’s the day before Wendy’s operation, a bilateral mastectomy. We’re putting final touches to plans here and there but it feels rather like having your first kid: sure, you buy the stroller, put up the crib, pick up a couple of onesies… but really for the most part there’s nothing you can do to prepare yourself for what’s going to transpire.
You really have no idea. We have no idea.
That’s where we are.
We had a pre-op appointment with the cosmetic surgeon today. With the nurse we covered an infinity of procedural details — drains and dressings and medicaments and timings — and the doctor put various marks on Wendy’s chest with a purple Sharpie. Always purple, he told me. Mysterious.
We asked Dr Maxhimer how the hand-off will work between him and Dr Taylor, the general surgeon. He says that Dr Taylor will cut along the lines he’s drawn, and do the mastectomy. He’ll then come in, and do the temporary expansion implants. But who will “close”? I will, he says; you always want a plastic surgeon closing and not a general surgeon. Today I learned.
Tonight Wendy will take an antibiotic and an Ativan, and then begin fasting (and from midnight, no fluids). At latest count we’ve got
- pills for anxiety
- narcotics for pain
- an anti-inflammatory
- a muscle-relaxant
- a stool softener
- an antibiotic
- two anti-depressants
- a special soap
and a spare purple Sharpie in case Wendy’s marks fade in the shower before the surgery.
Tomorrow’s schedule is a meticulously choreographed ballet. We got this. Unless schools are closed because of the snow, now falling heavily. Fingers crossed.
Wednesday, December 7th
We wake up to six or seven inches of snow. A new addition to the morning off-to-school ritual with the kids: brushing the car off and scraping the windshield. It’s cold, too.
After she’s dropped off the kids, Wendy comes back home and starts to pack bags. It’ll be easy enough for me to deliver anything she forgets, but its nonetheless a stressful exercise — packing bags for an unknown and, yes, scary future. I help as best I can.
Plus she’s been fasting; her blood sugar is low, which isn’t helping. She takes an Ativan, and we leave for the hospital. We arrive on time at 10.30am and take a quick pic outside:
Once in, Wendy’s ushered straight into pre-op.
First up, before even getting into a gown, was a complete surprise: a pregnancy test. Huh? Wendy has an IUD, and just had her period… but the nurse insists. She comes back with a negative result and we ask, somewhat perplexed, if anybody has come into pre-op and unexpectedly tested positive. Apparently yes, there was this one time. “She was so happy!”.
So now Wendy gets into a gown, the IV is put in, and she’s started on a drip of saline and one of an anti-biotic. From there straight down to Nuclear Medicine on the floor below, where they’re going to use a radiolabeled drug to trace the lymphatic pathway from the breast to the lymph nodes themselves, and identify the closest (“sentinel”) node to each breast on that pathway.
The idea here is that you biopsy the sentinel node and check for cancer cells. If it tests negative then you know outright that the cancer hasn’t gone anywhere else, because it would necessarily have to pass through (and leave traces in) the sentinel lymph node. Not having cancer in the lymph nodes has a profound effect on the nature and extent of the follow-up treatment which’ll be needed.
So they inject Wendy, twice in each breast, with a medicine doped with a metastable isomer of Technetium-99. It’s painful, and she screams. They roll her into a scintigraphy machine and on the screen I watch in real time as the drug moves through the lymphatic system from breasts to lymph nodes. In other circumstances it’d be wholly amazing.
We’re taken back upstairs and meet Dr Castro the anesthesiologist. Nice guy, very chill. He tells us what’s going to happen — intravenous drug, breathing tube, gases, close monitoring during the op, re-awakening. Here’s a patch to put on the skin behind your ear; it’ll help to reduce the motion-sickness that some people get with the anesthetic.
Any questions? I have a couple. Firstly, what’s the difference between an anesthesiologist and an anaesthetist? Turns out that these are equivalent terms in the US and UK respectively (though with some state-side ambiguity around a CRNA).
Secondly, what’s the intravenous drug which you’ll knock Wendy out with? It’s propofol, says Dr Castro. Isn’t that the drug which Michael Jackson overdosed on? Yes it is, he says, but really it’s the fault of the cardiologist who prescribed it. I suggest that it’s probably not a drug that one should be doing recreationally. “Right? Not in your house!” says the doc.
The anesthesiologist leaves and we’re on our own for a while in the pre-op room. Wendy falls asleep; I check Twitter. I chat online with a guy who has a neat idea for an improvement to @congratsbot.
It’s 12.45pm and Dr Taylor pops in. We wake Wendy and chat a little bit about the operation, just recapping what’s going to happen. Dr Taylor’s part (the mastectomy and lymph node biopsy) is expected to take about 2 hours, with the preliminary reconstruction work immediately following will be maybe 2½.
They give Wendy an IV of midazolam, to make her sleepy and (amazingly, I thought) to inhibit the creation of new memories for a while. She’s calm and strong.
At 1.18pm I say goodbye and she’s wheeled away to the OR. As she rounds the corner I’m sobbing.
I leave the hospital and get lunch. I treat myself to a large scotch.
After my late lunch it’s time for school pick-up. I head to get Lux and right as she walks out of school, at 3.02pm, a call from the hospital. Lux is on edge and panics a bit as she hears just my side of the conversation, but it’s just shift-change on the waiting room reception, and they wanted to let me know that everything’s going fine.
Lux and I head to Cecilia’s school and pick her up.
The kids have packed suitcases for an afternoon/evening playdate with some best friends, and they’re excited, so we head straight over.
Just as we’re getting out of the car, at 3.28pm, I get a call from Dr Taylor. She’s done with her part, she says, and it went well.
The lymph nodes tested negative, she says, and my mind does a quick backflip trying to parse the sentence and work out if that’s good or bad news. She senses my confusion and clarifies that they didn’t detect cancer in the sentinel lymph nodes which they removed. My hand must have instinctively gone to my heart when I understood, because after the call Lux asked me what it meant. Did you hear something that made you relieved, daddy?
After dropping the kids at their playdate I head back to the hospital, and set up camp in the surgery waiting room. A couple of hours later, about 6.30pm, Dr Maxhimer comes by to say that he’s wrapped up, everything went well, and Wendy is in the recovery room. She’s groggy and nauseous. She’ll be out of recovery in about an hour and I’ll be able to see her then.
At 7pm Dr Taylor drops by to reassure me that the mastectomy went well, and the lymph node results — while just preliminary — are encouraging. A more detailed biopsy will identify any microscopic tumors developing.
At 7.45pm they wheel Wendy in. She’s talking coherently, but slowly, and she’s sleepy. As she drifts off I put her wedding ring back on her, and leave to pick up the kids from their playdate.
Thursday, December 8th
I drop the kids off at school in the morning and run some errands before going to see Wendy at lunchtime. She has her friends Sarah and Shelley with her, and is incredibly itchy all over.
I spend most of the visit scratching Wendy all over with a brush, and lamenting the itching.
It’s somewhat funny, though, and Wendy’s in good spirits. We even take a little walk around the acute emergency department where she’s staying — machines and monitors and IV drips joining us an a wheeled stand for the trip.
Later on I bring the kids for a visit. Lux is scared by the darkness of Wendy’s room and the beeping, whirring, and flashing machines attached to her. Cecilia is un-fazed, and hops up on Wendy’s bed for a cuddle.
Friday, December 9th
It’s a cold morning and I light a fire at 7am when I get up, kids still asleep. Once it’s going I lay out a blanket in front of it and make a picnic fireside breakfast for the kids, featuring banana bread which Wendy baked before she went into hospital. 7.30am the kids come down and it’s a hit.
After dropping the kids off I head to the hospital to see Wendy. I bring her a cappuccino.
The itching’s much better but the pain’s worse. It’s really not looking good, and with the pain Wendy’s not sleeping well — which is making everything worse. As it happens, Dr Taylor drops in and characteristically she’s immediately on the case: let’s give you a bolus of morphine and then switch you from the IV to oral analgesics.
Dr Taylor shares with us again the news about the lymph nodes being clear, and how that leaves us in a good spot, and then she’s off to do the paperwork for the pain medications. A nurse comes in to give the last dose of IV morphine and lets us know that they’ll be keeping Wendy in until tomorrow.
Later I do after-school pick-up, hang out with the kids, and cook some dinner. After kid bedtime I find myself configuring a “meal train” being put together by one of Wendy’s friends. Help is on its way!
Saturday, December 10th
The kids wake up early, and it’s another cold morning. We make a fire together — the kids helping gather kindling, and screwing up newspaper — and we relax together for an hour or two, the kids watching TV shows on the iPad. It’s nice to just hang, and we’re all excited to have mommy come home later.
We all go to the gym, then out for lunch together before picking up Wendy. The lunch place has wiki sticks, which the kids love. Lux finds that the restaurant has one of her previous creations up on the “kids wiki sticks creations” board, and makes them two more for the same spot.
We get to the hospital with Lux in a much better mental place than last time. Everything is considerably less spooky and strange in the light of day. Within minutes Lux is getting ready to push Wendy in her wheelchair, and asking the nurse all sorts of things about sick people.
When we get Wendy home we immediately find that re-integration is difficult: I’ve been in control of the house and kids, briefly unfamiliar with sharing responsibility and authority; Wendy’s similarly unfamiliar with her new physical and mental limitations, and how much she can offer in practice. We fumble a little bit.
We install Wendy in bed by about 2pm, and I take kids for the rest of the day. Drop Lux off at a birthday party, take Cecilia back to the hospital to pick up a forgotten blanket, back to pick up Lux, pop to the shops to get stuff for dinner.
After dinner Wendy’s awake enough to read the kids a story before bed.
Sunday, December 11th
Wendy’s unconscious in bed most of today, completely knocked out by the painkillers. Her parents arrive at lunchtime to take the kids for a little bit, which is a big relief. I use the time to run some errands, do some cleaning, put some laundry away.
The first meal of the meal train arrives. It’s Chinese take-out. There are some meat and veggie gyoza, some rice, a couple of kinds of soup. The kids pick the chicken noodle soup and have a bowl each. It’s not something we would have picked ourselves, but it’s good. Score one for the meal train.
After bedtime, though, Lux throws up first in her bed all over her duvet and pillow, and then, on sitting up, all over her bedroom floor. It’s really foul, too: barely-digested Chinese soup with the heavy and sour stench of bile. Everywhere.
We put Cecilia in the spare room, and Lux joins Wendy in our bed after rinsing herself clean in the shower. I clean up the disgusting mess in the kids’ room, scraping noodly vomit from the rug, the bed, and elsewhere — almost myself puking in the process.
Within a couple of hours Lux has thrown up again, this time in our bed. More cleaning, more disinfecting, more laundry. I spend the night on the sofa when I’m done.
Monday, December 12th
I’m at work. My boss is in town. We’re doing planning for a new product.
Tuesday, December 13th
I’m up early with the kids, making breakfasts and getting Lux’s lunch ready. It’s during teeth-cleaning time, before leaving for school, that Dr Taylor calls.
Those lymph node results which were so great? Not so much, it turns out. A more detailed assay reveals a 3mm tumor in one of the three nodes taken from the right axilla. The cancer’s on the move, it’s spread, and there’s no doubt now that we’re looking at chemo and possibly more. We need to book follow-up with the oncologist.
Wendy cries. She’s so fed up, and devastated by the news. I take the kids to school and head to work. More planning with my boss.
Later in the morning we’re at Dr Maxhimer’s clinic, getting Wendy’s dressings changed and a check-in on the progress of recovery. Everything visible is looking good, we’re told, and the doc takes the staples out of Wendy’s chest. She gets prescriptions for new pain medication; something stronger, which should provide some relief.
In the afternoon I drive my boss to the airport so we can spend some 1:1 time together catching up on things. It’s good.
Wednesday, December 14th
I wake and throw up at 2am. I’m hot and cold, I’m on the edge of barfing again. My knees, inexplicably, are hot to the touch and aching so badly I can’t even get back to sleep. At 7.30am Wendy brings me a cup of tea. I drink it and throw up again. I feel like death.
I take the kids to school and come back home to clear my work schedule for the day. No way I can go to the office. I sleep fitfully all morning.
I sleep most of the afternoon, too; Wendy’s folks do school pick-up.
In the evening I head out to do some grocery shopping while Wendy gives the kids a bath. I get back to find the family by the fire and a bath coated with Cecilia’s chunky vomit. I clean it up, feeling nauseous myself, and when Cecilia throws up again at 2am the next morning she at least does it in the bowl we gave her.
Thursday, December 15th
At lunchtime we have our first appointment with Wendy’s oncologist. This is where the serious business begins: Dr Maxhimer is looking after Wendy’s recovery from surgery, and the breast reconstruction process; Dr Andorsky is looking after curing Wendy’s cancer. He lets us know that we’re looking at chemo and radiation and an estrogen suppression regime.
The chemo will be six cycles of three weeks each, using Cytoxan and Taxotere. The day after each infusion Wendy will get a dose of Neulasta to stimulate the bone marrow to boost her white blood cell count. The doctor says we should expect Wendy to feel pretty grim the week of the infusion; better the week after; and pretty normal the week after that… and then it’s time for the next infusion.
Radiation will be three weeks of therapy, five days each week. And then after that Wendy will start five years of Tamoxifen, to suppress estrogen production.
And oh, by the way, the chemo will likely render Wendy infertile, so are we done with having kids or not? Because if we’re not, we’re going to need to see a reproduction specialist to talk about egg-freezing or embryo-freezing options. This is significant news; we’d not decided either way about having kid #3 or not and don’t much want a decision to be forced on us.
Onwards, then, to Dr Kondapali who’ll talk to us about IVF. We’ll need to set up an appointment immediately, because chemo begins early January.
In the afternoon my mom Sue arrives. It’s a huge relief. Doctor appointments aside, Wendy is still spending almost all of her time in bed — knocked out on narcotics — and looking after everything is a lot of work.
Sunday, December 18th
Sue succumbs to the virus which has so far claimed Lux, then me, then Cecilia — and spends the whole day in bed throwing up.
to be continued
