Category Archives: Caregivers

Losing my sh*t in the grocery store

Posted by amelia sauter in Caregivers, Coping and tagged with , , ,

By Amelia

I feel like it’s my job to try to stay chipper and maintain a sense of normalcy in the shadow of Leah’s cancer. I can’t say I do a good job at either of those, but I am functional. That is, I am functional until I walk into a store.

I lose my sh*t every time I go shopping. Every. Single. Time. I’ve cried in the baking aisle at Wegmans, covered my face with my hands in the bulk section at the Green Star Coop, blubbered amidst the vegetables in the Trumansburg Shur Save, and wept openly by the shower curtains at Target.

The first time it happened was right after Leah’s diagnosis. Her 48th birthday was only a few days away, and I wanted to buy her some slippers. As I walked past the women’s clothing in Target, I saw some nice pajamas that buttoned up the front and I thought, Leah won’t able to pull a shirt over her head after her surgery. Oh my god – she has cancer. I struggled to hold back the tears. I then realized Leah would need a bathrobe since she might not be wearing street clothes for a while; my eyes started to well over as I chose a dark grey one. I pictured her in bed, weak and in pain, propped up by pillows, so I also grabbed one of those body support pillows (ironically called ‘husbands’) for her to lean back on, then stopped to wipe my eyes. As I piled each gift into my arms  – I hadn’t thought to take a shopping cart on the way in –  I realized that I wasn’t birthday shopping, I was Cancer Shopping. By the time I remembered the slippers I’d come in for, I was sobbing and dragging my Cancer Shopping purchases to the register like Steve Martin in The Jerk. (All I needs is this ashtray. And this paddleball game. And this lamp.  And this thermos. And this chair.)

Now it happens every time. Every shopping list is loaded: Zantac for Leah’s stomach, vegetables to sneak into her chicken broth, bottled water because they are working on our water main again. Paint from Lowes for the kitchen at the new building? I worry that we’ll never open the new restaurant. Batteries for the lights in the gingerbread house that I entered in a contest? Leah won’t be able to go to the reception if she has neutropenia. Warm hats? Cancer. Sorbet? Cancer. Christmas cards? Cancer.

Leah keeps asking me exactly why I fall apart in stores. It’s a hard question to answer. There is something about walking into a normal place filled with normal people doing normal stuff that shines a spotlight on the cancer and how fucked up this whole thing is. Sometimes they are talking and laughing like everything is fine. Sometimes they are yelling at their kids for something unimportant. Sometimes they are oblivious and they block the whole damn aisle while they stare at the peanut butter for way too long.

I don’t remember what normal feels like. I buy extra Kleenex, and raspberry juice for Leah because she says she can taste it even after chemo. I hope cancer never feels normal.

 

The Lesbian in the Room

Posted by amelia sauter in Cancer, Caregivers and tagged with , , , ,

by Amelia

You’d think cancer would be the Elephant in the Room. It’s not. The people who don’t want to talk about it simply never enter the room. The ones who are brave enough to join us there tend to have an intense curiosity about Leah’s experience. They ask a lot of questions about the details. They know they could be in her shoes (bra) someday and they want to understand.

So what’s the Elephant in the Room then? Well, it’s me. The wife. Without me in the room, Leah is a patient. With me, she is a lesbian patient. And I’m the other lesbian. And it is easier to ignore me than it is to acknowledge the elephant.

We’ve met with two doctors so far who walked in the room, said, “Which one of you is Leah?” and then didn’t greet me, introduce themselves to me, or even make eye contact with me during the appointment. I was invisible. I was Leah’s sister. Or Leah’s friend. Or the person who gave Leah a ride and didn’t want to hang out alone in the waiting room so here I was tagging along in the exam room for, oh, I don’t know, how about one of the most intimate and distressing conversations of Leah’s life?

This might not bother me if we were at the doctor’s office for a flu shot or a strep test. But the words out of these doctors’ mouths include things like, “You have to have chemotherapy for 18 weeks,” and “You’re going to lose all of your hair,” and “The side effects include DEATH. Now sign the consent form at the bottom.” The doctors know that most people don’t make decisions about cancer treatment alone. I am 100% certain that if I were a man sitting next to Leah, they would have assumed I was her husband, and I would have been included in the conversation from the start.

Whether or not I will be acknowledged as Leah’s wife should be the last thing on my mind during a time of crisis. But doctors like this remind me – and Leah – that we still need push for some people to respect our relationship. I speak up, I jump in, I contribute. The doctors look surprised, then start to talk to me, too. This elephant has a big mouth and asks intelligent questions.

Are you sisters? Leah chooses to introduce me from the start now. “This is Amelia. She is my wife.” Nice to meet you, most of them say. The ones who pause to freak out about our sexuality need to suck it up, because cancer doesn’t discriminate. This is a life or death situation, and we haven’t got the time or energy to battle homophobia.

The caregiver’s day

Posted by amelia sauter in Caregivers and tagged with

By Amelia

When someone is diagnosed with cancer, it’s incredibly time-consuming. I got a new job in September, one that I applied for when I married Leah and said “In sickness and in health.” After nineteen years of health, we’re bracing ourselves for the other part of the deal.

At the end of every day, I find myself feeling like I’ve accomplished nothing, and yet I’ve been busy all day. So I decided to track my activities to give you (and me) an understanding of what a caregiver’s day might look like.

6:30am. Eesah begins pacing. I shut the bedroom door and try to go back to sleep. He paces by the door with his curled arthritic toenails clicking on the linoleum, and then stands by his food dish and stares toward the bedroom door for two minutes. I can feel his watery old eyes. He stands there just long enough for me to fall back asleep. Then he paces by the door again. Tick, tick, tick, tick, tick, waking me up as my brain tells reminds me that his elderly bladder is full and he is at risk of having an accident. He falls down on his bed and sighs. I fall back asleep for two minutes. He paces by the door again and stands at his food dish, staring. This goes on until I get out of bed, or until he pees on the floor.

7am. I get out of bed. I feed the dogs and go outside with them to pick up poops and yell at Henny when she barks at squirrels, deer, leaves, wind, and Olive the Evil Possessed Chihuahua who lives next door.

7:20am. I wash my face, make coffee, put away last night’s dishes, and tidy up the other things strewn about the house as I wonder how the heck we always end up with so much stuff strewn about the house.

7:40am. I sit down with my coffee, check Facebook for any Life Altering Posts, and email my mom.

8am. Leah gets up. Eesah starts pacing again so I throw him outside.

8:15am. I call the contractor. I forgot to pay him for when he replumbed the tenant’s toilet. I recorded the payment in Quickbooks but never actually wrote the check. This is the caregiver’s brain. I tell him the check will go out in the mail today. As soon as I hang up the phone, I forget to write the check.

8:20am. Leah has already written a blog post. I edit it, and hug her and kiss her all over her face and tell her how amazing she is.

8:30am. I start the phone calls. Appointment for the Honda’s brakes. Changing my allergy appointment which conflicts with a post-op appointment. I switch to emails about cupcake wholesale orders.

9am. I put in the second load of laundry this morning. I can’t even remember putting the first in when I got up, but there it is.

9:05am. I make breakfast. I clean up from breakfast. I put dishes away. Again. I let Eesah out. Again. I don’t remember letting him in.

9:45am. I am still in my pajamas. Two and a half hours has past. I wonder what the heck I’ve accomplished, because it feels like nothing. I get dressed. I post cupcake pictures on the business Facebook page, watch a video on crow funerals, and read the daily Ithaca Voice and NPR news headlines. I call the trash company and tell them they forgot our bins again. I call the soda company and ask them where our refund check is. I mapquest the Rochester doctor’s office. I email the Cancer Resource Center to ask about local oncologists. I put the third load of laundry in the dryer. I let Eesah out again.

10:30am. We go for a walk, doctor’s orders. In the surgeon’s words, “You aren’t sick. Nothing is wrong with your legs. Get out there and walk.”

11:30am-6pm. Doctor’s visit in Rochester, combined with a trip to Trader Joe’s and/or Target and/or visiting my parents. Alternately, go to Felicia’s to bake and deliver cupcakes to the wholesale accounts. Alternately, go to other job (as soon as I find one).

6:30pm. I make dinner.

7:45pm. I write checks and do some bookkeeping, or go to store, or reply to more emails, or give Eesah a bath, or research cupcake recipes, or fill out our liquor license application, or gather materials for the health department permit, or hang the tenant’s curtains rods, or paint a wall, or take out the compost, or fill the bird feeder, or design a historical landmark gingerbread house, or mow the lawn in the dark, or bake granola.

9pm. We watch the Great British Bake Off. I feel guilty for sitting down. I make tomorrow’s to-do list. I remind myself that I have it easy: Leah can walk and talk and bathe herself and get in and out of the car and think and plan and create and laugh and heal and get through this and come out even stronger on the other side.

10:30pm. We go to bed and I snuggle up to Leah’s good side. I feel grateful.