This is Gonna Hurt Like Hell

“At least I know how I’m gonna die.”

My wife, Susan, wore a grim, glum smile, while I resolutely choked back silent tears that desperately wanted to shed their silence. We were sitting in a Korean restaurant in Barcelona, having come from the hospital where we’d just been told that her colo-rectal cancer had continued to metastasize and she now had cancer not only in her colon, kidneys and liver, but nodules in her lungs as well. Her doctors had decided to treat her cancer as “a chronic condition,” and we knew exactly what that meant.

Three years and several surgeries earlier, a different doctor in a different hospital had sat across a stark white table in a stark white room and reassured us that although my wife’s cancer had spread from her colon to her liver, “this is something we can fix.”

What they were essentially saying now was, this is not something we can fix.

That was December 23rd, 2018. Merry Christmas. Since that day Susan has had a variety of treatments, some of which I’ll go into at a later date. They have no doubt extended her life, even as they have at times made it misery. At one point, while Susan was receiving a targeted treatment normally used for breast cancer, her tumors were actually shrinking. We were jubilant.

And yet…we’d had our hopes demolished enough times before to be slightly more tentative, more wary in our jubilation. Dealing with cancer for several years is nothing if not emotionally mercurial – one moment you’re buoyant, the next you’re bludgeoned. One moment you’re sailing the crest, the next you’re plunged into the trough. One minute, well, you get the point. Emotionally, it’s volatile.

So when the pain came creeping back in, malignant fingers and filaments probing and prodding, it was massively disappointing but not necessarily surprising. It seems that the targeted treatment had destroyed the portions of her tumors that had a particular genetic mutation, but only those parts. And that, apparently, had really pissed off the remaining bits, which have responded by not only growing larger but proliferating in her lungs like mushrooms after rain.

Two weeks ago, while having one of our periodic meetings with Susan’s oncologist, I asked him what we could expect in terms of pain and symptoms in 3 months’ time, 6 months, 12 months, etc.

“If you keep having complications – intestinal blockages, kidney infections – then 5-6 months. If everything goes perfectly, maybe 10-12 months.”

Wait wait wait wait wait wait wait. That hadn’t been my question at all. I hadn’t asked for an estimate on life expectancy, hadn’t even wanted it. But there it was, laid out there stark and barren as a lifeless landscape. Bludgeoned.

Susan, although I think somewhat taken aback, seemed to soak it in with her typical equanimity and aplomb. I, in contrast, left that room a complete wreck. My response was visceral, and as I walked down the corridors of a hospital in the throes of covid-19, police tape and security everywhere, tears streaming into my mask and snot bubbling up behind it (at one point I pulled my mask down below my snotty nose and was immediately reprimanded by a passing nurse), I saw a very bleak, a very lonely, a very desperate future.

But I tried my best to hold it together. In a way I didn’t want to upset others who I passed, or to let others see how upset I was. I was, in the words of J Alfred Prufrock, preparing “a face to meet the faces that you meet.”

This is one of the – to me – ridiculous and pernicious fallacies I’ll be touching on in this blog series. That stoicism is strength, that emotional repression is helpful or realistic, that hiding hard realities from your loved ones – particularly your kids – is the right road to travel.

Not that I have any fucking idea what the right road to travel is. This is terra incognita for me – for us. But it’s land that has been mapped out by countless cancer travelers before, by both sufferers and their loved ones. There are trails in this terrain, paths worn by feet both dying and surviving, tragic and triumphant.

Several years ago my wife commented to our oldest son, D, then probably 7 years old, that so many folk tales, fables, and even Hollywood movies involve the death of the protagonist’s mother. “Why is that?” she asked.”Why is it always the frigging mother?”

D pondered for a moment, then answered, “Because it’s the worst thing that could ever happen to a kid.”

The worst thing that could ever happen to a kid is, sooner rather than later, about to happen to our kids. Six-to-twelve-months. It’s like an evil mantra, a twisted “hurry-up-please-it’s-time.” But who knows? Things change. They’ve changed before.

But this doesn’t feel like the seemingly healthy person who suddenly discovers they have cancer, is given 6 months to live, and is still around 5 years later. This has been a 5-year slog of surgeries, recoveries, radiations, chemotherapies, targeted and experimental treatments, ups, downs, sufferings and setbacks that has led us to this place. This place that very much feels like a dead end.

Susan and I talked about blogging about that end. About communicating to others what it’s like to have late-stage cancer. I googled cancer blogs and found out that there are an awful lot of them. Many of them – too many of them – defunct because the author was as well. So why contribute to this narrow genre of melancholy morbidity?

I’ve started this new blog not necessarily to talk about my wife, my family, or myself. It’s not meant to be a celebration of life or a contemplation of death – although it will probably be both from time to time. This is a conversation – albeit by its very nature a one-sided one – with the people who know and love my wife, my companion of 24 years, Susan Treadwell, nee Susan Kwak. If this free and frank examination of what it looks like to live with and die of colorectal cancer is helpful to others, then I welcome anyone suffering and those who love them to come along.

This blog is about, well, life and death – so you know, nothing too ponderous – so there’s going to be joy and sorrow and everything in between. We’ll try to be honest, even it that honesty is painful at times.

We’re all headed toward the same destination; Susan is just going to get there sooner than most of the rest of us. At least we – Susan and the people who love her – have a chance to see what the landscape looks like along the way. Perhaps it won’t be so stark and barren after all.

 

I write another blog, called Field Notes from Fatherhood, and have written quite a bit about Susan’s cancer. I’ll be sharing those here – in chronological order – since they provide a lot of background to where we find ourselves today.

The title of this post comes from the song “Hold On,” by Sarah McLachlan. Please give it a listen, it’s a beautiful, haunting song, like so many of hers.

 

 

 

4 Comments

  1. I find the open and honest expression of your experience to be calming in some way. I work in Palliative Care in a cancer center and what you write of is what I see on a daily basis. I am a social worker and helping families, and their children, through exactly what you write about, is the most challenging thing I believe life can throw at us. The pain is visceral, and I truly think that your blog will help other people even if it’s just knowing they are not alone, and someone else out there is experiencing something even remotely similar with regard to their their level of pain. My heart breaks for you, your wife and your children. I hope writing about it will be healing for all of you in some way. Peace to you and yours.

    Liked by 1 person

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s