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The Life of a Caretaker
By the cold and religious we were taken in hand,
Shown how to feel good and told to feel bad.
Tongue-tied and terrified we learned how to pray.
Now our feelings run deep and cold as the clay.
And strung out behind us, the banners and flags,
Of our possible pasts lie in tatters and rags.
-Pink Floyd
I remember the moment we received the news very clearly. I can't remember what the date was, not even what day of the week it was, beyond not a weekend. Susanne knows, but I don't. It was November, the stores already had Christmas decorations up and cards and gifts and music was playing. The season of giving. The season of brightness and light and for some, a holy season. A season of gifts.
I'd known, the first time I felt that lump in her breast, that it was cancer. Something deep inside me knew. She insisted it was a cyst, she'd had one exactly like it on the other side, and it'd burst and drained, just like she expected this one to. I knew better. But I let her prove me wrong. I dismissed my concerns as paranoia. I grew up in a family full of life-threatening and/or chronic illnesses, I was always ready to expect the worst when something was not right with someone I loved.
But she showed no other symptoms of cancer, and she was too young. So I let her confidence keep me floating along.
But I knew.
I finally got her to agree to go see the gynecologist I'd been seeing for my birth control for a basic evaluation. The place was mostly donation-run, so we could afford it. They referred her to a doctor here in town to have it biopsied, or drained, if it was a cyst, as Susanne thought. I sat there in the procedure room with Susanne and the doctor, looking away because I get squeamish about medical procedures, but I was there. I heard the doctor announce that it was solid, not a cyst.
The word cancer loomed in front of me. I knew. It was there for two years, and I knew every day and night of those two years. But there was the chance that it wasn't malignant, maybe just fibrosis, nothing to worry about, something that could be removed and life would go on as normal.
It was a few days before we heard the news. I think I had to call the doctor, instead of getting a call from her. I'd grown more and more nervous as we waited. That word kept whispering in my ear. Cancer. Cancer, it said.
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| Photo by Marla Austin Photography |
Finally, we found out. It was cancer. Any shred of hope I'd had disappeared. It felt like I stopped breathing, like my heart stopped beating in my chest and my lungs couldn't take in air and I wanted to die. Susanne was worried, staring at me for the news. I told her. She panicked. She started crying. And all I could do was numbly listen to the doctor. She gave us a referral to an oncologist here in town. There'd be tests. Medicines. Possibly surgeries.
My reality had suddenly changed. And I hated it.
I grabbed onto one tiny thread of hope at that point. After all, everyone knows that breast cancer is beatable. There's hope. Hope For The Cure, Pinktober said. It was everywhere, everyone knew that it was beatable. As long as she hadn't advanced to mets, we could shrink and remove the tumor, and she'd be healthy again, even if she had to wear a padded bra to keep from looking lopsided because one breast was half-missing.
There were days of tests. She had a mammogram to make sure it wasn't in the other breast. A PET scan to look for any signs of mets. A surgery for her port for the chemo infusions, and a liver biopsy. There was something on the PET scan that we weren't sure what it was.
I knew. She didn't just have cancer. She had mets. It was Stage IV.
My soulmate, the woman who'd stood by me through so much, through my own illnesses, through family problems and money problems and any other problem life could possibly send my way. She was there with me.
I tried to hold my breath after we found out there was something on the liver. I tried to pretend that if I just held still enough, if we stood there and counted our heartbeats until the danger had passed, that it wouldn't come for us. That it wasn't mets. That it wasn't the deadly stage.
But that voice, that part of me that knew, I knew this, too. She was dying. I was going to be left behind. I was going to be staring at another grave, like too many times before in my life, and I'd be talking to the wind instead of her.
Her oncologist confirmed it. It was Stage IV. He stayed positive, didn't mention that the average lifespan after Stage IV diagnosis was three to five years. He pointed out how many women with Stage IV went on to live even decades after their diagnosis. Susanne held onto that. I tried. I'd never been able to see living without her, not until we were little old ladies, living in an assisted living home and wearing goofy t-shirts and being annoying to the other residents and people working there with our random outbursts of laughter over nerdy, silly things that everyone around us would wonder what the hell we were talking about.
Suddenly, I was facing the idea that I'd lose her before I even hit forty. That I'd be a widow before we even got to marry. Someone else was leaving me. I was being left alone again, and I honestly didn't know what I would do without her. I couldn't see a future anymore. It was gone. I'd lost my dreams and my life already due to a psychiatric illness that took me away from the possibility of work, of a career, of school, but I could deal with that, as long as I had Susanne.
Now, nothing was there. It was just me. Just me and an elderly cat with Stage I kidney failure. That's all that was left.
Every day, I cried. I panicked. I made plans for what to do when the inevitable happened. I started trying to figure out what of hers to give away, what to send to charity, what to keep. I started looking at her wanting to say "I'll miss you" instead of "I love you." I did my best to keep that thought to myself. I was her main support, I was the shoulder to cry on, I wasn't the person to be doing the crying.
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Tune in tomorrow to read the second part of Jen's powerful essay, The Life of a Caretaker.
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