Life after chemo

My last bad chemo was Wednesday (taxotere and carboplatin), and I find myself reflecting and wondering, What does this all mean? Where am I going next? It would be easy to disappear back down the path into “normal” life, but I choose not to.

It’s common for cancer patients to get depressed and disillusioned when their chemotherapy regimen has ended, and it makes sense when you think about it. For the last 18 weeks I’ve had continuous contact with nurses and doctors who monitored my health. In some ways getting chemo is sickly comforting – it’s supposed to be destroying cells that want to destroy my body. And now I’m not getting it anymore. The security net of chemo has been taken away. Now I get to free fall and figure out recovery on my own.

You can see the chemo on my fingernails like growth rings on a tree, except it’s not growth, it’s destruction. If you look closely you can see six ridges on my thumb nails from the six chemo treatments. Interruptions in my cell growth. My anti-growth rings. One by one the ridges will disappear over time as my healthy cells take back my body.

With chemo out of the picture I am getting a glimpse of where I’m headed, but I’m also looking in the rear view mirror. Everything has happened so quickly and I really haven’t had time to grieve the loss of my breast and five months of my life. Chaotic doesn’t even begin to describe how the last five months have been. When I take a hard look, the chaos has been around a lot longer than that; it’s been more like two years. Cancer shoved that chaos over the edge adding in a big dose of terror and mortality.

It feels like I’m going backwards, something I don’t really ever do, but I have to if I’m going to process all of this in a healthy way. I have to back up to my mastectomy and take on those feelings. I have to figure out what this all means for me and where I am going next. Backwards is the new forward.

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My relationship with cancer

Lucky doesn’t begin to describe how I feel about my relationship with Amelia. We’ve been together for 20 years. We met at a yoga center where I was working, and Amelia – who was a vegetarian, non-drinking straight woman – was “finding herself.” I’ve always said that one day she was touching her toes, and then she found me, meat, and bourbon. -Insert my laughter here-

We’ve survived something most couples don’t: Owning restaurant business together. Having a business together catapulted our relationship to a whole new level. It took a while to navigate, but we’re awesome at it. We are a machine. (Here’s a tip for any of you who wonder if you could do the same: You both need to excel at different things and you need to accept those strengths and not be a pissy-pant because you think the other person has it easy. Trust me, no one has it easy. And you can’t be a control freak.)

So now here Amelia and I are dealing with cancer. Cancer is the most self-centered thing that has ever happened to me. It’s all about me and my cancer most of the time. But in reality, it’s not just about me. It’s also about Amelia, my caregiver, my Love. Sharing your relationship with cancer sucks. It is a physical and emotional strain day in and day out. It doesn’t go away. We don’t forget about it. It’s not like just having a bad day. This is forever.

I won’t go too much into the details of HER2 positive breast cancer, but there is a chance the cancer will show up again in my lifetime either at the same site (local recurrence) or a metastasis (a distant recurrence). The longer it takes to come back, the better because maybe there will be a better treatment developed in the coming years.

Then again, the cancer may never come back. It could be completely gone and we may never have to go through this again. That what I believe 80% of the time, but when I’m in the 20% place I’m obsessive and gloomy. It’s not a good place. I think over time that 80% optimism will increase until, as one good friend of mine put it, one day I will go through a whole day without thinking about cancer, my mastectomy, or chemo.

I know this: if the cancer does recur, Amelia and I will deal with it, and it will be hard. But our love transcends time, difficulty, grief, and everything in between. Love is my motivation.

 

 

I don’t do Resolutions

Amount of New Years resolutions I’ve ever made: zero. It’s not my thing, never has been. I’m hard to keep up with (ask Amelia). I am constantly moving. I see possibility and go after it, think something and do it, dream something and make it happen. I am a walking resolution. I resolve to get shit done all the time, cancer or not, depression or not, financial instability or not.

Because I’m constantly changing, I am often a ball of contradictions. I love change; it’s a constant, and it’s happening right now. How I feel and think today could change tomorrow because if I’m rigid I am not open to possibility.

With cancer there is no room for rigidity. You are forced to go with the cancer flow. Monday I worked my butt off for eight hours installing heat ducts, patching a floor and removing a tub; tomorrow I may cry half the day (while working).

Crying is a pain in the ass. It gets in the way of work for me. It makes me stop and feel something I’d rather not feel. It’s as inconvenient as cancer. I was not much of a cryer before cancer, but now I cry more frequently, though unpredictably. Yesterday I was working on heat ducts in the basement and I found myself crouched down with my head in my hands, weeping. One of those I have cancer, when is this going to stop moments.

The alternative to crying is anger with a side of resentment, and nothing good comes out of either of those things.

Lesson of the week: crying is good. If I did have a 2016 resolution, it would be to feel more ok about a good cry.

 

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.

 

Life is fragile

Life really is this fragile. I’ve said it, I’ve seen it, I’ve known it, but now I am experiencing it. Sometimes it’s hard to accept that one tiny cell is tearing me apart. Being vocal about it helps. Every emotion I have has a purpose in this, even the negative ones. Now is not the time for silence.

All of our lives intersect somehow, somewhere, all seven billion of us. Even if we don’t know each other, even if we’re on different continents. The same things happen to every single one of us: we’re born, we live, we die. Death truly is the great equalizer.

When Amelia first asked if having cancer made me think about my own mortality, I immediately said no without even thinking. It was a 100% scared and reactive response, a denial of the true worst case scenario. There are things you don’t want to speak out loud or hear, words like metastasis. And words like brain, bone, liver, and lungs: those are the words that make you think of your own mortality. Those are the words I don’t want to hear. Those are the common places HER2 positive breast cancer likes to spread to.

Amelia and I are opposites in many ways. She is incredibly comfortable with death. She’s worked with death on many levels from toddlers to the elderly. I often call her a Guide to Death, because that is exactly what she is. She is the person you want around in medical situations. I am not so comfortable with death, but I’m much more comfortable than I used to be because of Amelia’s incredible perspective.

I can admit now that cancer does make me think about death. I realize that nothing is mine. I possess nothing. Everything I think I own will sooner or later belong to someone else: my house, my clothes, my truck, my banjo, my furniture. Some of these things already belonged to other people who are long since dead. It really is a circle of life and death, and in between we’re just borrowing time. Does it sound like I’m at peace with it? I’m not.