Cancer — part 1
A year ago today I started keeping a diary of my experience being husband to a wife with what turned out to be Stage 2B breast cancer.
Here’s the first part.
Wednesday, October 26, 2016
We go in for the biopsy, finally. It’s been a few weeks since Wendy found the lump, but we’ve had a number of false starts with our family medical practice. The whole process has seemed pretty uncoordinated so far but the BCH people seem to be on the case.
Dr Wickersham and his team are great. I ask about the machine in the corner of the room; “it looks like a boob-sucker”. Dr W says “ah yes that’s the boob-sucker 2000. we’re very proud of it”. Dawn, our PA, is welcoming and so sympathetic. Lisa, our nurse, is fantastic.
Wendy requests help with her anxiety, and they give her a valium to chew on.
Over the course of 45 minutes they anesthetize Wendy and take a tissue sample. Dr. Wickersham explains that we’ll hear the results in 2–3 business days: if not on Friday 10/28, then on Monday 10/31.
Friday, October 28
Waiting… waiting… nothing.
We resign ourselves to a weekend knowing nothing more, but looking forward so much to getting some certain clarity Monday.
Monday, October 31
We wake up worried, but comforted that today we’ll finally find out what’s up. It’s been over a month since our family doctor poked at the lump which Wendy found. We’ve been told that the hospital will relay our results to the family clinic, who will call us.
12pm: no news. Wendy and I have this conversation:
1pm: I call Clinica. They’re closed for lunch until 2.20pm.
2.30pm: I call Clinica. I wait 11 minutes on hold. I speak to someone who tells me that they’ve received nothing in the way of results.
4.45pm: still nothing, and I call BCH. I speak with the biopsy nurse, Lisa. She confirms that the results are ready, signed off by the pathologist several hours ago. The sign-off process results in an automatic fax to the ordering doctor (our family doctor). “I don’t know why Clinica wouldn’t have these. Let me fax them manually right now. If that fails, here’s a direct line to the BCH radiologist”.
We end the day with no news. Maybe tomorrow? This is agonizing. It seems crazy that the results are “in” but nobody will tell us what they are. Beyond crazy, in fact; it seems cruel.
Tuesday, November 1st
We wake up early; I take the kids to school. I’m not planning on going to work until we have the results.
9.30am: we call Dr Wickersham, the radiologist. He’s not supposed to give us the results: protocol dictates that he should relay them to the ordering doctor, who will give them to us.
But please, Dr Wickersham. Please.
OK, you have an invasive ductal carcinoma. It’s indeed cancer. It’s a spreading type. That’s all we know right now. Treatment: unclear. Prognosis: who knows. Dr Wickersham is fantastic, though: even over the phone such an understanding and empathetic individual. We feel that he 100% appreciates where we’re at mentally. He gets it.
We tell him “please deal directly with us from here. We don’t trust that Clinica will do their part, so please don’t expect them to”. He’s on it. He gets it. We get calls later that day pointing us to follow-up with various people.
6pm: our family doctor calls to see how Wendy’s doing. What on earth has taken you so long? Her regular routine doesn’t have her at the clinic Mondays, and today she happened to have the day off… but now she’s catching up…
Dr Greer, are you telling me that if you’d been on vacation this week we’d still be waiting to hear results from me? “This is the system we have…”
“Well, I’ll tell you that this system sucks. It doesn’t work. It’s not OK”.
Wednesday, November 2nd
It’s been weeks now since Wendy found the lump. And great, we now know it’s cancer but have no idea what next. It’s almost worse than not knowing at all: knowing that it’s super-serious but having no information about the nature of the tumor, what treatment will look like, and what the prognosis is.
BCH has recommended that Wendy makes appointments with surgeons. She makes one for the following afternoon… and then, after some begging, bags another for a surgeon who’s been recommended to us. 9am tomorrow.
Thursday, November 3rd
“Wendy, I’m so sorry you have a breast cancer. We’re going to cure you”.
From the get-go, Dr Taylor seems fantastic. She’s a nationally recognized breast cancer surgeon. She’s friendly, sympathetic, empathetic, straightforward and honest. It turns out that BCH is one of a few Breast Cancer Centers of Excellence in the country.
All of a sudden it feels like we have stepped through a portal into an entirely different world of medicine. This world is full of smart, caring people who have their shit together.
Dr Taylor shows us the images. Points out the salient features. Draws our attention to favorable aspects (the tumor has estrogen receptors, according to early assays) but also to concerns (Wendy is young to be going through all this).
She takes us through the mechanics of breast cancer and the various factors which affect it. We talk about milk ducts, lymph nodes, sentinel nodes, radio-tracers, hormone receptors, gene mutations, and the goal of keeping Wendy alive and cancer-free until she’s 100 years old.
At 39, Wendy’s young to have breast cancer. It’s a concern. If a 90-year-old walked in presenting these issues they’d do a lumpectomy and send her home feeling fairly sure that she’ll die naturally before suffering from another tumor. But Wendy should have a long life left. There’s an obligation to ensure that we get this done properly.
First up, given Wendy’s jewish heritage, we need to establish if she has the common BrCa mutation. Women with this mutation have an 80% chance of breast cancer—and, if they ever have it, a 90% chance of recurrence. Dr Taylor’s words: “if you’re positive for BrCa, I’m coming for your boobs”. A bilateral mastectomy would be the preferred intervention. Even if it’d mean a long cancer-free life, it’s still for now an inconceivable outcome for Wendy.
If we’re not positive for BrCa, then most likely we’re looking at a lumpectomy, chemo, and radiation therapy. Chemo isn’t always needed, but given Wendy’s young age they’d usually recommend it. It’s possible that a DNA analysis of the tumor will identify some minimally upsetting chemo therapies which would work.
Minimal radiation therapy would be twice daily for just five days: Mon–Fri of a given week. More likely we’d be looking at twice daily over five days—for six weeks.
We feel good enough about working with Dr Taylor that we cancel the appointment with the other surgeon. She’ll be involved anyway, as part of the weekly multi-disciplinary “breast conference” that the hospital runs to review and advise on every case.
Friday, November 4th
Wendy meets with Nanabow, who will be her “cancer concierge” and who will help her navigate the sea of treatments and physicians and tests and deadlines and so on.
Nanabow gives Wendy a dime tour of the facilities: she meets the radiologist, gets to walk around the cancer center, sees where she’ll have her chemo, and so on. She also takes Wendy to the genetic counseling department, to set up an appointment for the BrCa test.
Nanabow gives Wendy a fancy pink water flask and a make-up purse made by breast cancer survivors. Wendy, ill-advisedly, calls me up and is like “so hey I went to BCH and it turns out that not only do I have breast cancer…” OMFG WHAT “…but I have a new water bottle and purse”. Jesus.
Saturday, November 5th
Wendy does yoga as usual in the morning. Before she goes, though, she releases “the news” on Twitter.
There is a positive outpouring of love and support, which gives her tremendous buoyancy. Love and hugs pour in across Twitter and email. Friends even send gift cards for takeout meals, to make the treatment period easier. There is a universe out there supporting us.
I’m leaving for India tomorrow. It’s been booked for months but has long been hanging in the balance. Given that there’ll be no action this coming week we figured I should go.
Sunday, November 6th
I leave for India. I’ve not been away for a week since the kids were born.
Sunday, November 13th
I’m back from India. Wendy’s been to the genetic counseling people, and had her DNA taken. We expect results “in two weeks”.
Monday, November 14th
Wendy has a 7.30am appointment for an 8am MRI. We don’t imagine it’ll be much of a thing. I take Lux to school, and hang with Cecilia first thing. Having been away, though, I’ve a lot to catch up on and try to multi-task.
Wendy calls at 9.30am or so. The MRI was grim, scary, claustrophobic, and overall unpleasant. They gave her valium to get through. Cecilia and I go to the hospital to pick her up; we bring her home, and ~11am I get an Uber to work.
5.30pm I get an Uber to the hospital, and bring the car home.
Tuesday, November 15th
The results of the MRI are in. The main tumor is twice as big as it looked on the mammogram, and there’s more than one.
We await results of the BrCa test, but at this point the practical result will be whether we’re looking at one mastectomy or two, and whether Wendy gets to keep her ovaries.
Wendy was depressed before, but now sinks deeper.
Friday, November 18th
We leave for the UK
Tuesday, November 22nd
Genetic test results clear; no BrCa.
Wednesday, November 23rd
A call from Dr Taylor, the surgeon. All the data are in and it’s time to talk next steps.
The MRI shows nothing wrong with the left breast, so Wendy can keep that one if she wants. The right one’s got to go, though, and some patients opt to remove both at once for symmetry reasons. We’ll see.
Dr Taylor asks Wendy if she already has a plastic surgeon. Um, no. OK, then I’ll put you in touch with one. The idea is that the surgery will involve Dr Taylor removing breasts and a plastic surgeon prepping them for reconstruction immediately behind.
Dr Taylor will coordinate with the plastic surgeon to schedule a surgery in the next few weeks.
Wendy and I are both thoroughly depressed, in the clinical sense. The journey is exhausting. We are momentarily close, then spark off each other—and Wendy ends up in the pub on her own.
Thursday, November 24th
We reconnect but it doesn’t last long.
Tuesday, November 29th
Two big appointments today:
- With our new GP. We ditched the last one after the various administrative fiascos. Wendy hopes to get some kind of boost on the antidepressant front. She’d also like a medical marijuana card.
- With the plastic surgeon. We’re going to learn what the procedure looks like, and when it might be.
Wendy got new antidepressants in the morning (not a MM card, though). At noon we met to see the surgeon.
The clinic feels welcoming. The lobby has fancy-looking ladies who I figure are here for cosmetic treatments. There’s a silent video playing in the waiting room on the topic of “submental fullness” (a.k.a., a double chin) and revolutionary new treatments. Within a few minutes Wendy and I are taken to a consultation room.
The room’s set up with an iPad Pro mirroring to an LCD monitor on the wall. The PA sets to play a saccharine and patronizing video about reconstructive mammoplasty while we wait for the doctor. It covers the elements of the two basic types of reconstruction: flap surgery and reconstruction with implants. By the end Wendy is feeling nauseous.
Dr Maxhimer arrives and immediately rules out flap surgery: if that’s what we’re looking for, he’s not our guy. It’s fine; Wendy’s not interested in that approach anyway, so we continue: with the iPad, the doctor shows us pictures on the monitor and draws annotations on them as he explains.
We go over the whole thing: how the surgery will work, how long it will take, how long the drains remain in, how often Wendy will come back for implant expansion, what implant exchange is, how the chemo will affect the reconstruction schedule, what Wendy will and won’t be able to do week by week post-op, how things will feel. The doctor introduces us to his “basket of boobs”.
We cover a lot of detail, but the concepts and mechanics are straightforward enough to readily rationalize about.
Now we just need a date for the first surgery. Dr Maxhimer assures us that he’ll coordinate with Dr Taylor and get us a surgery date asap.
Thursday, December 1st
We’ve still heard nothing and we’re getting antsy. Dr Taylor’s office confirms that Dr Maxhimer’s office hasn’t been in touch. Wendy asks me to call Dr Maxhimer’s office and chivvy things along. I do so, trying to be equal parts gentle, assertive, and come-the-fuck-on.
Within a few hours things are moving along, and by the end of the day we’ve got a confirmed surgery date of December 7th. Pre-op appointment with Dr Taylor on December 3rd, and with Dr Maxhimer on December 6th. And with physical therapy on December 5th.
It’s on.
Friday, December 2nd
Pre-op appointment with Dr Taylor. We see the MRI images for the first time, and yeah that tumor looks large. And yup pretty clear that there’s other stuff going on: a “multi-foci” affair, they say.
We get the details of how the surgery will go down. We’re expecting 4–5 hours in all, Dr Taylor removing the breast tissue and Dr Maxhimer inserting expanders behind the muscle wall on each side. Dr Taylor will also be taking sentinel lymph nodes on the left and right, with pathology results delivered live to the OR as the procedure progresses.
Dr Taylor explains she’ll also probably fit a “port” to Wendy during the surgery, for use in the chemo. It’s a trivial extension to the mastectomy, and will make things much easier in the following phases.
If the lymph nodes are clear, we’re in good shape. We conclude that the cancer hasn’t spread elsewhere. What if they’re not? Where could the cancer be? Liver or pancreas, most likely. In that case we’d do a PET scan of the whole body to find tumors.
Dr Taylor says again: “we are going to cure you”. It’s tremendously reassuring. Bring it on.
Sunday, December 4th
We agreed that we’d bring the kids in on the story this weekend. After we finish a late family breakfast the timing seems right and I get a kid on each knee. Let’s talk about the schedule of the coming days.
Today we’re going to get a Christmas tree, and then later we’ll go to Cecilia’s Advent Spiral ceremony. Tomorrow? Work for me, school for Lux, a day off for Cecilia (“Monday fun-day”). Tuesday, Lux will be going to her nature explorers class after school. And Wednesday? Wednesday mommy’s going to be going to the hospital for a couple of days.
Why? What’s going on? Well, there’s a part of mommy’s body not working quite right and the doctors are going to take care of it. You know we’ve been seeing some doctors recently? Yes? Well, they’ve been figuring this thing out.
Is it catching? asks Lux. Very much no. Absolutely not.
Do we have to visit mommy in hospital? No, not if you don’t want to. We don’t want to! OK, but I’ll be going and you can come any time. If you don’t then you can hang with play-dates and friends. We’ve got lots of fun play-dates planned!
What part of mommy’s body isn’t working? Well, it’s in her boob. Oh, is it a lump or something? asks Lux. Yes, it’s a lump. Oh, I know kids can’t get that, says Lux. We don’t even have boobs that can get lumps.
Lux wants to know if the doctors know what they’re doing. Ha! Very very much so, we reassure her. Our doctors are fantastic and they are offering excellent care.
But we’re going to have to help, me and you and Cecilia. We’re going to have to be a support team which looks after mommy when she’s sore and feeling miserable. Lux, Cecilia, and I create a special team handshake which we can use to cement and celebrate “team mommy”. Go team!
Both kids are whispering to me now about nice things that we can do for Wendy for when she gets back from the hospital. Can we go get the Christmas tree now? asks Cecilia finally. We go upstairs to brush our teeth and get ready to get a tree.
Next see Part 2.
