When I first got diagnosed, I did a little light reading. And even with all the guidebooks, it's still like being dropped off in a foreign country you've never heard of. The currency in your wallet has no value, you don't speak the language (which has a strange grammatical structure all its own), you don't know the customs or the laws. And when you step off the plane and into this new land, the authorities confiscate your passport so that you cannot leave. Welcome to Carcinomistan, and you'd better plan on staying.
Some of the things that happen are inconsequential, but odd. Among other things, the hospital sent a walker home with me when I was discharged. It wasn’t until later that day that I looked at it and wondered why on earth they’d done that. After all, it was my arms that weren’t working - my legs were fine. What they should have sent me home with was an adult-sized version of a baby walker. You know the ones with a hard plastic tray all the way around, a sling seat, and wheels? Those are leg-powered and I remember my own kids scooting around in one. Plus I could have snacks, meds, and my iPad within easy reach at all times. It would be helpful to have a tray in front that swings out and a high-backed, cushioned seat that reclines for naps. I think there is a definite marketing niche for these.
Another strange thing is that part where upper body nudity becomes very casual. Every specialist I visit has me gown up and then spends some time examining my incision scars and in-progress reconstruction. I joined a couple of Facebook mastectomy support group and suddenly my feed was filled with pictures of mismatched breasts, necrotic nipples, ragged scars, and tattoos. I've had to unfollow the groups so that I only see those posts when I go to that group's page.
And pain. It's just my constant companion. Apparently it varies depending on where tissue expanders are placed, but mine are under the skin and hurt all the time. All. The. Time. The tabs at the top have curled up and poke into the underside of my skin, the stitches into the soft tissue pull with each breath, the edges are sharp all the way around, and my skin feels stretched to the breaking point. In fact, it's almost become a curiosity to me, so I made a count-forward calendar on my phone to see how long the pain will last. All I can do is hold on until it's done.
And then there are the electric shocks, which I'm told are the nerves in the skin regenerating. We'll just say it's both startling and unpleasant. One day I picked up my phone and touched the home button to unlock it when a wave of shocks went through me. I reflectively clutched the phone and gasped. Siri thought I was laughing and he helpfully laughed back. Thanks, Siri.
Finally there are the weird, clueless and downright inconsiderate things people feel moved to say. I can't count the number of times someone has immediately told me about someone in their life who has died of breast cancer. Not helpful. Or suggested that it's "so easy to cure these days."
Well, actually, it's not a curable cancer. The best you get is "no evidence of disease" because there is always a chance that rogue cells have bypassed the lymphatic system and are quietly setting up a colony in your bones or liver or brain. Or people who tell me how they would feel or what they would do in my situation. As if anyone can know that. Or the "free boob job"
jokes that make me want to pick up anything within reach and clobber the person. Or this classic that was said to me, "Oh, that's terrible. Will they have to cut both your breasts off?"
What the actual fuck would compel someone to make that comment?
But, there are blessings. Friends who have landed in this strange country before me and can offer invaluable support and advice on navigating this disease. Other friends who give me rides to doctors' appointments and sit with me while the oncologist talks about possible treatments. Flowers and cards and gifts that started arriving my first day back and continued for a couple of weeks. Food delivered to lighten the load. People checking in by text and email to see how I'm doing. Well wishes and prayers from too many people to count.
And this guy. Because when I got pulled into the cancer vortex, my husband took my hand and went under with me. In addition to taking care of me, he has shouldered all of the housework and cooking in the weeks since the surgery. He flushed my drains tubes and changed dressings, looks at my mangled body without flinching (something I cannot yet do myself), and is endlessly patient and loving in the face of my fear and grief. And when I apologize for being in constant pain and a burden he stops me in my tracks, wiping away my tears and telling me, “I am ALL in. No matter what happens. We can do this.”
I can’t imagine a better partner in this strange land.