Tuesday, October 6, 2020

So...my wife has cancer. Four words I'd never thought I'd have to write.

In October 2016, she was diagnosed with a breast tumour. They quickly removed it, as well as the lymph nodes around it. They did find a small amount of cancer in the lymph nodes but didn't think it had spread beyond that, and they treated her with localised radiation rather than chemotherapy to minimise the side effects. They then declared her a "cancer survivor" and in my mind, that chapter was behind us. Like most people, I thought any cancer detected early enough was survivable.

Exactly three years later, just as the pandemic was circling the world, my wife started having difficulty breathing. She was tested for Covid-19 but it was negative. Her GP gave her an inhaler to see if it relieved the symptoms; it didn't. Finally her GP requested a CT scan, which was scheduled for 30 March. On 26 March, New Zealand went into lockdown and the hospital cancelled all "non-urgent" scans.

Because of her history, oncology were already aware of the situation and they called to say they would try to organise a CT scan through a private hospital. That happened on 31 March and on 1 April they told us her cancer was back. I'd like to say it was an April Fool's prank, but it wasn't.

They said the reason she was having trouble breathing was because there were lesions on the lining around her right lung (the pleural) which were causing the lining to fill with fluid, preventing the lung from expanding. They put a needle in her back and drained the fluid: Normally there is about 10ml of fluid (less than a capful); they drained 1.5 litres.

After a few days, she was able to breathe normally, but it was short-lived and she had the pleurel drained three more times. On the last one, they injected talc which -- for reasons they don't even understand -- tends to turn off the fluid production. Thankfully she hasn't had any issues with her lungs since then.

While that was going on, they also did a biopsy to confirm the cancer was the same type as the original tumour (it was). On 27 April, they scheduled a meeting to tell us what they had confirmed: It was stage 4, meaning it had metastasised (spread) and it was not curable. All they could do was slow the growth to give her more time, but the 5-year survival rate was less than 25%. That is, my wife has a 1-in-4 chance of seeing her 56th birthday.

The cancer was hormone-receptor-positive, HER2-negative breast cancer, which meant they could target it with endocrine (hormone) therapy rather than chemotherapy. The problem with the endocrine therapy is they know it's only effective for a short period; the mean time for letrazole is 15 months. There is another medication, palbociclib, which extends that to about 24 months. New Zealand had only begun financing palbociclib in April of this year; before that it would have cost us over NZ $5,000 (US $3,325) per month. If there was a bright side to this diagnosis, that was it.

I think there were 3 lesions on her pleura, 2 lesions in her bones and a "mass" near her heart. I say "I think" because when they were giving us this diagnosis, I was thinking about the scene in "Breaking Bad" where Walt is being given a diagnosis of lung cancer, and as the doctor is talking about treatment options all he hears is a ringing noise, like tinnitus. It was a powerful scene, and I felt the same way.

My wife was, oddly, relieved. We'd agreed after the 1 April meeting not to google it or second-guess the doctors, and I'd carried on obliviously, thinking we might have to go through another round of surgery and maybe even chemotherapy, but we'd get through it just like before. She had promptly googled it and, based on what she'd read, thought she had months to live. To hear them talking about years rather than months was a relief.

We told the kids straight away. It's hard to know how they are processing it, because they don't often talk about it, and I don't usually ask because I don't have the reserves to support them while dealing with it myself. One night a couple of months ago I was helping my daughter do some homework and she was frustrated and started saying stupid things like, "I hate my life" which to her was just a phrase; it didn't have any meaning. But to me it was deeply upsetting and I blurted out something like, "Mum's going to die and you're complaining about your homework?" That did not end well.

The good news is she has responded to the drugs; there are no new lesions and her "cancer markers" have fallen from 150 to 50, which means nothing to me but the oncologists are quite pleased. After the first month -- when we were at the hospital two or three times per week -- we've gotten into a routine, seeing the oncologist once a month and having a CT scan every 3 months.  We saw the "palliative specialists" from the hospice and the doctor got my wife on a mix of fentanyl, paracetamol (acetaminophen) and ibuprofen which generally manage the pain. Unfortunately the hospice counsellor was useless, and my wife's one attempt to see the hospice physiotherapist ended when she couldn't find parking.

My wife gave up her job because the combination of the cancer, pain meds and endocrine therapy left her exhausted, and she wanted to spend what energy she had with the kids. She usually sleeps about 12 hours but it's very broken sleep. Sometimes she'll take a nap, but she's always been a very active person so I know it's difficult and frustrating for her.

Our friends ask us what they can do and I tell them, "Nothing yet." Right now she's still able to take care of the house and the meals and the kids and me. At some point that will change, but I can't even imagine it. Which is to say, I can't let myself imagine it. It's like getting too close to the edge of a cliff: The thought of falling is so terrifying, you can't imagine what it would be like to actually be falling.

We don't talk about it much; usually something sets us off and we end up just crying and trying to console each other. I can't imagine what it's like for her; we can talk about mortality in the abstract but we can't conceive of our own death. I'm sure she can't imagine what it's like for me, either; she has no idea how much I depend on her, how much her love enables me to just function every day. We often talked about growing old together, and in my mind this always ended with me going first because I could not conceive of life without her. I still can't.

Does it feel better to have written this? No. Does it feel better to talk to people about it? No. Does it feel better to know people who have gone through similar circumstances? No. My uncle often quoted his father (my maternal grandfather) and these words resonate now more than ever: "Sometimes there's just no use talking."

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