*Please see the bottom of this post for an explanation of why I started with Chapter 2 and what it means to me.
How did I get here? The words bounce around my head like a game of pong. When I close my eyes I can still see, taste, feel the pain of the last three years.
I drove by my office building the other day and felt a story– a tape played over and over again in my mind– and yet I couldn’t quite put my finger on which story it was. Was I sitting in my office in that brick building set back from the road when I was diagnosed with liver melanoma? That doesn’t feel right. I make associations with places, things, dates.
It was July 18th, 2013. My primary care doctor who had gotten involved in the whole thing called my cell phone just after 8:30am, when I was supposed to be in a staff meeting.
“It’s negative,” she said, breathing lightly into the phone. “The pathology report came back negative.”
My heart actually physically felt like it had an invisible clamp that had been gripping it and squeezing it tightly and suddenly it loosened; kind of like a snake that had been gripping it’s pray it constricts and then for some reason, lets the pray go. My stomach hurt.
I remember crying, of course. I remember telling her that in those three seconds of those two words I felt like I had just gotten my life back.
The two weeks before it had felt like my life was over; like I was technically living and breathing but I might as well have been dead and gone.
Two weeks. Three seconds. Two words. “It’s negative.”
The prognosis was incurable. Maybe 10 years, maybe not. I was 36 years old.
I was newly married (3 years, still newlyweds in my mind), and had just suffered a miscarriage after well over a year of trying to get pregnant and finally going through IUI’s and IVF, blood, countless band-aids (ironically), ultrasounds, up early to drive through traffic and get to work on time, so many medicines, shots in the thigh, finally egg retrieval, tons of Gatorade and legs up (seriously) and kind bars and then embryo transfer and deciding how many to implant. The decisions! I still remember exactly what black pants and sweater I was wearing when my fertility doctor called with the pregnancy results. We were living in an apartment at the time and I was in our family room right next to the kitchen where SHL was standing washing dishes at the sink. It was February, right before my 36th birthday, and I was wearing my gray furry boots. I would be due in October, my favorite month.
Back to the office, the tape playing in my mind. The misdiagnosis. The wave of life and air that filled the room and how slippery my fingers felt as I dialed my husband. Then my parents house phone. And then my brothers cell phone. He was just stepping off of the elevator at work. “Oh my g-d,” I remember him saying breathlessly into the phone. His words carried the weight of all that we had prayed to, asked things of, bargained with, felt angry at, and maybe even wondered about the existence of.
I remember that his words sounded breathless because we had all stopped breathing for the almost two weeks that it took for us to get the biopsy results back. The tape then loops back to the day of the biopsy. The nurse– so kind– who wiped my tears and listened to my story. “I think I’m too young for this,” I said, pretending like what I said could have an outcome on the results.
Another tape. This one is of me leaning forward at my desk, putting my forehand in my hands, my elbows pressed against the cool wood of the desk. Finally I look up at the ceiling and with bitter, angry, devastated tears in my eyes I swear fiercely under my breath, “Fuck you g-d.”
Another failed pregnancy test.
Just as quickly as I said it I knew that I should take it back. What had I done?
But I knew that it was out there, and surely I would be punished now.
I believed that my punishment would be what had me so upset in the first place; that I’d never get pregnant or if I did, it would take years and years. That somehow my dreams of me not just becoming a mother, but of carrying my own child, would be taken from me because I had said that I hated my g-d. I had brought this upon myself. It’s “magical thinking” but it still haunts me. What if I had never uttered those words?
It’s October now. The month our baby would have been born.
The room. Now that I think about it that room and all of the rooms are really pretty bare. Sterile. A painting or two on the wall of some cliche bouquet of flowers or scene of the city that somehow is supposed to comfort but really just reminds you that you’re not home. Not even close. Three chairs. Always three chairs, except for the swivel chair that we leave open for the doctor. The paper crinkling like a crabby old man as you lie down on the table to be examined. Hands on the abdomen. On the legs, ankles, feet. Any swelling? That would mean something, I think. Swelling. Sit up. Listen to your heart. I believe if my heart could speak it would say, “Please g-d,” bah-boom, “Not me,” bah-boom, “I’m scared.” Bah-boom.”
I hear him say something about not knowing how long people with my diagnosis live.
It’s just how you imagine it to be, like a movie perhaps. Camera pans in on the shock, music swells, the unknown hangs in the air.
G-d how I wish the whole thing had been an act of some kind. A movie, a play, any kind of fiction. I’m just telling you a story of a girl (mid 30’s, blonde hair swept up into a messy ponytail, bubbly personality but always looks tired) who I made up who couldn’t get pregnant and then did and maybe it was twins? We’ll never know because even though we only implanted one, it looked like there could have been two fetal “poles” but then there was no heartbeat to hear. She went home by herself because she and her husband had (optimistically) taken two separate cars to the doctors office so that they could then go back to their respective jobs and now they’d have to do just that, pretending like everything was fine. Everything was so not fine and going back to work that day seemed like torture so instead, she went home to call her own mother and to mourn.
A bird had crapped on the very left side of the front windshield and as she got in the car she thought about how stupid it was that bird crap was supposed to mean good luck. It all seemed so clear now, like rain on a wedding day– these sad things that we tried to make prettier with superstitions. There was nothing good about bird crap and there was certainly nothing good about not hearing a heartbeat.
And then a few days later she turns 36. Soon thereafter she goes into the hospital to have a D&C, and three months after that she has another one because her hormone levels aren’t going back down to normal like they’re supposed to. As if one reminder of a lost baby wasn’t bad enough.
Two weeks later there are lesions in her liver. Memories that have traveled discreetly and quietly and viciously from her eye to her liver after almost eight years with no cancer treatment. She doesn’t even find out the “normal” way, from a doctor, but sees in her online patient gateway that she has been scheduled for a biopsy. What?
It’s a Sunday and she pages the on-call doctor.
Fast forward. If it was a movie the screen or the weather would tell you that it is autumn. Driving in the car with her Mom after another painful shot in her left eye for her glaucoma. (Long-term effects from the eye cancer). Almost all of the vision in the left eye is gone. Shadows still creep. Sometimes.
Three days before her fourth liver ablation surgery and her cell phone rings. It’s her physician assistant. “Girl” must have given them permission when she started her care at this hospital years ago to let them test her blood. She doesn’t fully remember this– who would just days after being diagnosed with a stage IV cancer– but she thinks that maybe she signed up for this because she naively thought that it may help with treatments and/or cures for her incurable cancer?
It’s the BRCA 2 gene. “A greater chance of breast and ovarian cancer,” she hears her physician assistant say.
“What now?” her Mom mouths looking worried as the girl semi-listens to something on the other end of the phone that feels like a bomb going off in her body. She thinks she hears “Genetics counselor,” “After you take care of this, of course,” (meaning her upcoming surgery for more tumors in her liver) and other words that are coming out of the PA’s mouth but are falling pretty much on deaf ears.
“Fuck you,” I think. Hey, it’s better than swearing at g-d, and anyway I think this, I don’t say it out loud.
Three days later. No surgery. Too many tumors, my surgeon explains to my family as I wake up from the anesthesia. Back to the oncologist for another game plan. Let’s change things around and instead of surgery and then a systemic treatment, let’s just go straight to the systemic treatment.
I wonder if I should have a hysterectomy and I wonder it out loud to various people and I know that I’m saying it with such a straight face and such a flat affect that I have become completely disconnected from myself. All this time I’ve been so focused on the mind/body connection and then one call and it’s like it has split in two. It’s as if I’m in another’s body looking at this poor girl who can’t be me. Looking from the outside in, instead of the other way around.
I wonder, and not for the first time, if I did something in a previous life that was so awful now I’m here. I joke to my friend that maybe I actually was hot-stuff in a former life; she could actually be sitting across from Cleopatra drinking an iced latte with almond milk right now. I don’t know what to do other than to make a joke.
Maybe I was an awful dictator, maybe I did awful things to good people. Maybe I was a bug and I’m still not getting it right. Or maybe it all gets made up with some amazing kind of heaven. Jewish people don’t necessarily believe in heaven, but I do. Reunited with grandparents and just a hop over that “rainbow bridge” to visit with my beloved pets Benji, Charlie, Teddy and Cadbury.
I imagine eating the sickest ice cream sundae ever with extra marshmallow sauce, only it’s like negative calories.
What? It’s heaven.
This feels like hell.
*This was one of the hardest things that I’ve ever had to write. You didn’t miss Chapter 1, I haven’t written it yet. I decided to start with Chapter 2 and the rawness of it all. I want the story to start with hope, not pain. Thankfully where I am today is not where I was when I was first diagnosed, and for that, I’m grateful. #courageiscontagious #getbusyliving #kacp #teamlozier#iamenough xoxo