Incurable is the word I’ve started using to make sure I don’t lose track. Because I keep slipping in that mud when I try to understand what the doctor meant when he told my sister that she will “never go into remission.” Incurable metastatic cancer. If I say it enough times my thoughts will begin to encircle the diagnosis and it will become something I can begin to understand.
Of course we know nothing at this point. We have no idea how long she’ll live, how many years she’ll spend fighting off the reoccurring cancer. We have no idea how effective the aggressive chemotherapy will be (though she places a lot of hope in her oncologist’s optimism, his smile, very specific turns of phrase.) We don’t know which side effects will take hold once they remove the IV drip, how ill she’ll feel, whether or not her hair will fall out in three or four days. We don’t know if she’ll be around to watch her son grow up, or if she’ll be able to participate if she is. We simply don’t know. And not knowing is the utter shits.
I have started to lean a little too heavily on a few of my friends. One, the surviving son of a woman who spent nine years with stage four cancer, helped me grow up in another century. I completely failed to support him in this crisis. I had no idea what he was feeling. We were just idiot kids together and we made each other laugh. It was bigger and more important than either of us knows how to say, so we don’t. We just tentatively reach out in the middle of the night when we both have insomnia.
J: So it would be out of bounds to anonymously mail her a bag of gummy dicks or sign them up for a foreign language nudist magazine?
K: Hahahaha! She’d be all over that! Especially obscure foreign busey mags. good, old, hairy retro mags would be even better.
K: nudey. Stupid phone. Though Busey holds appeal as well.
J: nudey busey, we could be rich or terribly poor.
K: There are things I won’t do for money.
What I did do was organize a way for people to send my funny, inappropriate, rabble-rousing sister the filthiest, funniest, most bizarre postcards they could find with the worst joke they’d ever heard written on the back. My hope was to provide an answer to the incessant chorus of “what can I do?” that they meant with all their hearts.
Within two days, 1500 people had responded to our outreach. In a week, the post office box began filling up. Our web page was inundated with hysterical, tacky, bizarre posts from the furthest reaches of the web. We interspersed them with messages about the value of laughter in the face of illness. We held back the harshest details. We talked to each other about how much she wanted to share, how to tell people what was really going on, and which people to tell.
Her husband asked me through tears if, in the unlikely even that they both failed to survive to see their 3-year-old son grow up, my husband and I would act as guardians. I didn’t even look at Allen before reflexively answering, “Of course.” It was hours later, in bed, when I got around to asking him if he was okay with that. We’ve had several conversations about how grateful we are that our children are raised and we are free to begin living our lives as individuals, rather than parents. I think he was sincere when he said, “of course” as well.
When Mary and I get together these days we talk about what successful treatment might mean, and what to do with the heaviness of everyone’s sadness. We talk about how she’ll slow down her work significantly but is afraid of the boredom that permeates full days spent with a toddler. We talk about the stark realities of her pain and her inability to take care of household tasks. The cancer in her spine led to a fracture in one of her vertebrae. She’s terrified that she’ll make the injury worse while her body is in no condition to heal.
I took her to lunch at the home of another friend, an occupational therapist who helps people return to their lives after long stays in intensive care units, traumatic brain injuries and strokes, after losing use of one or several of their limbs. Florentina greeted us warmly and almost immediately said, “You’re sitting down all wrong! Let me show you how to sit!” While the two of them talked about how Mary could protect her fragile back, I blew hundreds of bubbles for their toddlers in the back yard.
These are the string of events. These are the things you do to take care of someone who is sick. The rest of it is much, much harder. It spins around in your head without connecting. Eventually, you realize that you may be two places removed from the crisis, but you are watching from your vantage point, with all your messy and disorganized emotions, trying to make sense of it, just like everyone else. This isn’t my illness. It isn’t my story. But here I am, living my interrupted life with the people I love, and that’s something.
I’ve started noticing strangers in public who are caring for others. Grandchildren who gently and patiently help their grandparents at the grocery store, mothers of special needs children, a man walking his gray, arthritic dog slowly in the park, friends who sit by quietly and listen… just listen to another’s tears. It gets to be a bit overwhelming. This is what people do for each other, but it isn’t something that comes naturally to me.
I’m no saint. I’m a selfish pain in the ass, if it gets right down to it. I’ve always erred on the side of self-indulgence, and I rarely extend myself more than is socially necessary. I seem outgoing, even warm, but I haven’t made more than five new friends in over ten years. I haven’t tried. Most people are ass holes, I’m convinced, and I’m not going to waste any unnecessary energy on massaging ass holes. Honestly, I wouldn’t even know how.
That’s why, for the duration of my adult life, my much more open sister has been my closest friend (an unexpected turn of events after the 15 years of nonstop arguing that ensued when we lived under the same roof.) I’m going to be pretty fucking lonely when she’s gone. I have no idea how to make the most of the time we’ve got. Not a single god damned clue.
All that bucket list nonsense is pretty meaningless when you’ve got to balance pain and treatment and medical bills and a job and a three-year-old and a ticking-ticking-ticking clock that is eventually going to stop, but you don’t know when. Screw you Jack Nicholson and Morgan Freeman. It isn’t that simple at all, you rich, privileged sons of bitches. This isn’t some big budget movie and you can’t just pick up and leave the things you value most in exchange for a bunch of expensive thrills. Life is what is happening here, and it’s pretty damn hard, even without cancer.
So I go to the post office. I open the tiny door of box 744. I smile at the handful of letters and postcards leaning against its narrow walls. I walk my badly-behaved dog in the park on the way home. I shoot a text message to my sister, something I hope will be funny. I ask my daughter what I should make for dinner. I find excuses to bother my son at work. I try to fill my days and cling to the people around me. It’s what I know how to do.
postjulia 