Waiting to Exhale

by Amelia

“It  must feel great to get your last bad chemo! Congratulations!”

Three weeks ago, this was the message that kept flashing on our cell phones and repeating in our emails. Leah read them as she laid on the couch with achy muscles, bowel pain, and  a mug of ginger tea. She did not feel great.

I keep waiting for the moment when everything feels better. We’ve been holding our breath since September 3, waiting for the moment that it’s “over.” I’m starting to feel just how much it’s a process, not a moment.

Yesterday was the first day I relaxed a little. These past three weeks I’ve been waiting for the bad chemo to work its way through Leah’s system – especially her immune system – so I can stop worrying that she is going to die from a stupid little germ that hitched a ride on her off a clumsy orange cart at Home Depot. I have never known what it’s like to worry like this, and to have the worry actually be based in reality. Leah’s blood work came back good yesterday, so woo hoo! She’s not going to die for hopefully another 40 years or so.

But Leah’s treatment is still so far from being over. Until November, we will drive the hour and a half to Rochester once every three weeks for her targeted chemo, Herceptin. Starting March 14 she’ll get daily radiation for six weeks at the nearby Cayuga Medical Center in Ithaca. In addition, in the next six months Leah will need at the minimum two echocardiograms, two appointments with the hair growth researcher, an annual mammogram and ultrasound at the breast clinic, a follow up with the breast surgeon, a new patient appointment with a local Ob Gyn, and a consult with a Rochester Ob Gyn surgeon named, of all things, Doctor Toy.

So yeah, we don’t feel like celebrating. With Leah feeling a bit better, the chaos and stress of life is already knocking impatiently on the door. When she was diagnosed, we had closed the lounge for good only five days earlier. The goal was to finish the renovations on the new restaurant and bakery and open in November. And March is here and we’re not there yet. Talk about stress. I can’t even begin to describe it, but good grief I am sure not exhaling anytime soon.

 

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Losing my sh*t in the grocery store

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.

 

Please don’t kiss the cancer patient

please do not kiss the cancer patient

by Amelia

Leah drove herself to chemo – alone – this week. I had to wait for the furnace repair man to come. First let me say that while physically it was an acceptable choice, emotionally it did not feel okay. It should have been an easy, drama-free quickie treatment since it was just Herceptin (the targeted chemo that has no immediate side effects). And it was, except Leah’s blood work showed that she has neutropenia.

What is neutropenia? The short answer is that Leah’s immune system has crashed. The long answer is that chemo kills fast-growing cells like cancer, hair, and bone marrow where the components of blood and the lymphatic system are made. Leah’s white blood cells are currently 1.7 (normal range is 4-11) and her neutrophil number is .6 (normal range is 1.8-8). What this all means is that Leah’s ability to fight infection is seriously compromised. A cold, the flu, a skin infection: even the simplest germ could be life-threatening.

The good news is that these numbers can come back up again, and hopefully will in the next week or two. The bad news is that they can go back down again since she gets the Taxotere and Carboplatin every three weeks until mid-February. This could be a long road. The doctor told Leah to avoid people, especially groups, and to definitely stay away from sick people.

What you need to know is this: Please don’t kiss the cancer patient. Don’t kiss, don’t hug, don’t get close. Even if you think you aren’t sick. Because how do you know you didn’t catch something that’s brewing in you right this second? You will get an annoying cold, but Leah could end up in the ICU.

Here’s what else you need to know if your friend has neutropenia:

  1. Wash your hands. A lot. With soap. It doesn’t need to be antibacterial soap, but make sure you scrub them good.
  2. Cover your mouth when you sneeze or cough. And then wash your hands. If your 3-year-old doesn’t think to cover his/her mouth and tends to spray mucus everywhere, then please leave your 3-year-old at home if you can so all of Wegmans isn’t infected.
  3. Don’t go to work – especially in a restaurant – if you have cold or flu symptoms. If you are the restaurant boss, maybe you ought to think about offering sick time. A novel idea in the service industry. If you do have to go to work, cover your mouth and wash your hands. A lot. If you handle food, wear your damn gloves. They are required for a reason.
  4. Don’t be a close talker. You know who you are. (You’re probably also a mouth kisser. Ew.)
  5. Wear a mask at the doctor’s office if you think you might be contagious.
  6. Oh, and your unvaccinated babies? Please keep them far from Leah. When you make a choice not to vaccinate, you may be taking away someone else’s choice to live. You might think I’m being a germaphobe or judging you, but this is a matter of life or death. Think about it.

And may I add, if you do have the flu, please do not listen to Gwyneth Paltrow. 

 

Chemo reaction

by Amelia

Leah reacted to the Taxotere today. If there’s one thing we’ve learned so far about chemo, it’s that you can’t get through it without side effects. It is hopeless to hope to avoid them all, so brace yourself for the ride.

Leah was zoned out in a Benadryl fog in her chemo chair (think vinyl nursing home recliner) when the back pain hit. In Leah’s words, it felt like her lower spine was about to explode. A flurry of nurses surrounded her immediately. One took her blood pressure, another yanked the curtains shut, someone temporarily stopped the chemo and increased her fluids, and somebody hooked her up to oxygen. The nurse practitioner was in the room in under two minutes. Two minutes after that Leah got a shot of hydrocortisone, and in two more minutes the pain was almost completely gone. The nurses kept an eye on Leah for a while to make sure she was okay before the offending chemo was started again.

Normally this place is weirdly quiet, the silence only interrupted by an occasional nurse shouting to an elderly hard-of-hearing patient “What are you doing for Thanksgiving this year!” Leah’s reaction is definitely the most interesting thing to happen on the chemo unit so far. No one wants to have a chemo emergency, but if it happens, you want a speedy and excited crowd of medical staff in your cubicle with you tending to your needs. Thanks for the excitement, Leah.

leah with chemo

A conversation with Leah about hair

mohawk

It’s 8:20pm on Wednesday night. Leah’s hair started to fall out this morning. Our friend Rachel is on her way over to shave Leah’s hair into a mohawk, a last hurrah. 

Amelia: What do you feel like your hair says about you?

Leah: I like my hair. I liked both my breasts, too. I don’t consider myself that vain, but what little vanity I have left is going to fall off of my head.

Amelia: What do you feel like you are losing?

Leah:  My identity. I’m becoming amorphous. I’m a blob. That is what it feels like. I’m half of a person without my boob, without my hair. You’d think it would be freeing to shave your head, right? But it’s not a choice. Some chemical is forming me into something I don’t want to be, a toxic wasteland. I feel victimized.

Amelia: Why a mohawk?

Leah: Because it makes a statement:  I don’t give a fuck about what people think a woman should look like. It’s giving the finger to the system that says women are supposed to walk around in skirts, in high heels, in makeup, and have perky tits.

Amelia: What makes you hesitate to get the mohawk tonight?

Leah: Because it’s real. I’m losing my hair.The minute I look like cancer, I am cancer. I’m a billboard. I can’t avoid this. I can’t speed away in my car, or slam a door, or walk away.

Amelia: Do you remember what I told you in the hospital when you went in for your mastectomy, that I was fighting the urge to scoop you up and whisk you out of there? My desire to protect you was that strong and I wanted to get you out of there so badly.

Leah: Yes. I remember.

Amelia: I want to protect you from this, too. I feel the same way about your hair.

Leah: I know. I know. So do I. But there’s nothing we can do. This is happening.

Mohawk

The Lesbian in the Room

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

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.

The new normal

September 29, 2015

By Amelia Sauter

Everything has changed. Our daily lives are filled with different conversations, ones I didn’t imagine having until we turned 85 years old. They include bizarre lines that have never come out of my mouth before like Good job peeing! and The fluid in your drainage balls is looking pretty good today and Don’t worry, Leah, I don’t mind doing the dishes. I wake up in the morning and think immediately about cancer. The phone rings and instead of cursing it, I jump to grab it in case it’s someone from the surgeon’s office with new information. I can’t sleep well at night because I’m listening in case Leah needs something, and I’m worried about rolling into her, too. We tried sleeping on opposite sides of the bed so I wasn’t near the wound and the drains, but after 20 years together, it was like trying to sign your name with the opposite hand. Illegible, disorienting, and just plain silly.

Cancer makes everything else seem stupid, like filling out the planning paperwork for the Health Department for our restaurant’s new kitchen and getting the truck inspected before the end of the month. Our jokes have become morbid, like when we were both dragging ass in the grocery store and I said, “I’ve got a migraine. What’s your lame excuse?” And when I made us dirty martinis with the juice from our empanada olives, and announced one was Caregiver size and one Patient size and told her to guess which one was hers.

Leah doesn’t need much now, and I don’t know what to do with myself. She won’t be working for the next four weeks. What’s my new normal? Nothing is what it was a month ago. Cancer literally stopped us in our tracks. Now I don’t know where to start, and I’m not sure where I’m going. What do I want to do today? What should I be doing today? Those are two different questions, and I don’t have answers to either one.

We have cancer

September 22, 2015

By Amelia Sauter

We have cancer. That’s what it feels like when someone you are that close to gets a diagnosis. WE have cancer. At least that’s what it felt like three weeks ago at the Wende Breast Clinic. The sad clown face on the nurse that day as she walked Leah out from the biopsy shouted a diagnosis that they couldn’t say out loud before the pathology report came back. I called my parents that night and said Leah is going to be told tomorrow that she has cancer and I don’t know what we are going to do. The shock, the grief, the WTFs. Leah and I are going through all of it together.

Everything in your head comes to a crashing halt when the cancer diagnosis comes. And the ripple effects of the crash shake up every corner of your life. For us, that ripple has an aftershock that most people don’t have to deal with: We were planning to open a new restaurant this fall. So now we are both indefinitely unemployed. Until we get pathology reports back after surgery and meet with an oncologist, we are both in limbo. No plans can be made. Talk about bad timing. For now, I paint and I cry. I paint every fucking wall in that building, every ceiling, every piece of trim. I paint and I cry and I hope. It’s all I can do.

We have cancer is changing to Leah has cancer now that the surgery is approaching. Our paths are separating. I can’t do that part with her. I can’t lay on the operating room table with her and join her in in the LaLa land of anesthesia and in the exhaustion of pain and painkillers. I am not losing a breast and I will not know the same grief as her.

My path is a river of utter helplessness. I have never before had the feeling of wanting so badly to protect the person I love most and been able to do nothing. Every second, I fight the urge to grab her and run from the hospital and take her away from all this. But I can’t save her. It is the worst feeling I have ever had in my life.