Broken Doll

By 2pm today I was exhausted — not ordinary I’d-like-to-take-a-five-minute-brain-break exhausted, but to the point where I couldn’t put complete sentences together. Couldn’t follow a train of thought. My hands shook. I wasn’t sure I could stand up without falling. And here I am trying to carry almost half of a small company on my shoulders, no one else who can do it, and I can’t. I can’t keep up. It’s too damn much.

I can’t even walk the three blocks to work without breathing hard.

And Sunday night I spent an hour on the phone with my mom crying because I was afraid to wash my hair. Afraid of how much of it would wash down the drain. Another fistful gone and how thin would it look? And it turned out that despite the golf-ball sized mass of (now-short, no less) hair, it’s still hard to tell. So of course I’ll be doing this again tonight. My hair is dirty and needs a wash and how much of it will go down the drain? How visible will it be?

I’m too tired. Too tired to deal with this. I get home and can barely move, can’t pack for moving house, I feel like I’m way behind on everything. There’s no one here but me. And I can’t keep up. And tomorrow I may wake up feeling okay like this morning but then go to work and do it all over again until I can’t even move by early afternoon.

My nose bled all over the bathroom sink tonight. I blew my nose because I couldn’t breathe with all the blood clots in there and it just came loose and bled like a river. And here I’m thinking that if I tell my nurses about this, I don’t have the time to give them if they want to see me.

I need to wash my hair. I don’t have the energy to deal with the wig. I want to cry.

Technically it started Thursday morning. You know how you always comb out loose strands of hair in the morning… there were more of them. A wad of hair about three times as big. But I combed and it stopped coming out and I spent four days pretending to myself that it wasn’t real, that it was a fluke, that it would stop.

So this morning I comb and the wad is that big with every stroke. A handful of hair for each swipe of the comb. And I comb and it doesn’t stop. I comb some more and it’s still not stopping. In the shower strands tangle around my hands and come away in clumps. And I comb my hair again and it’s still not stopping.

So I finally just quit combing.

I somehow got it into my head that this would be a relatively neat process. They told me it would fall out pretty much all at once so I imagined locks of hair falling out in patches… strands I could collect, braid together, hang on to.

But it’s a mess. Tangles, clumps, wads. Hair everywhere. I’m afraid to even touch my hair at all for fear it will just shed out completely, a tangled wispy mess trailing from room to room on the floor.

You can’t tell yet. I’ve stopped combing so it stays. My hair’s a mess, it needs a combing, but I don’t want to touch it. I tried to straighten out some clumps to braid together and couldn’t. I don’t want all of it to end up in some tangled messy pile on the floor.

Tomorrow I will call the wig place and have them cut it off. At least that way I can braid and save some of it. I think I will leave it maybe an inch long. I don’t think I can handle going from long hair to nothing in one leap.

I haven’t had hair that short since I was maybe 5 years old. Even in elementary school my hair was at least chin length. I’ve been growing it out for 15 years, hoping that it would get longer than just past the shoulders and realizing after a while that it just won’t grow any longer than it is.

I can’t even imagine what this is going to look like.

It felt like the PET scan was the only thing still standing between me and the edge of the cliff. There is this monster snapping at my heels and the choices I have left are jump or die. And I look over this precipice and have no way of knowing what obstacles I’ll hit on the way down or how badly damaged I’ll be once I hit bottom.

On the way down it robs me of my strength, my physical fitness, my hair, my sexuality and goddess I wonder what’s left that still even makes me human anymore. What will be left of me when all this is over? I’m losing myself.

Jump or die. What choice is there?

So I jump and fall and the world is dark and the mirror is dark and I cannot see, cannot see what lies ahead. The drugs sap my energy and I sleep for hours on end. My brain is foggy. I lose fine motor control in my hands. My eyes are tired. My mouth stings every time I eat. I panic daily that today will be the day when my hair starts to fall out in clumps and I’m not ready for that. I am afraid I will not be able to keep up. I’m afraid.

I’ve jumped. I’m falling.

I cried when they found the tumor. I held it in until I left but then fell apart.

Falling apart.

It’s already desexualizing me. Desire is buried under distraction, worry, fear, pain, exhaustion. Tests and more tests. I feel broken. I feel like it’s robbing me of so many parts of who I am.

Every night I stand in front of the mirror. I pull my hair back and try to visualize what it will look like when it’s all gone. Not feminine. Not female. Not human. I can’t quite see it. Can’t quite imagine it. And there’s fear and pain buried there in the not-seeing.

I cried to David: “This is supposed to be my body, not my enemy.“

It’s like this thing with limbs and skin and a thoroughly fucked-up lymphatic system doesn’t even belong to me anymore. It took itself away from me, saying it will do with itself as it likes and the hell with me.

The morning after the oncology exam I sat on my bed staring at my feet and didn’t recognize them as mine. They looked like someone else’s. My legs felt heavy and I walked without feeling the floor.

This is supposed to be my body, not my enemy.

I don’t want to be sick. I don’t want to lose my hair. I don’t want to be stared at. I don’t want to be pitied. I don’t want to be not-human.

And it’ll get worse before it gets better.

Friday morning. Doc calls and says she’s puzzled by and quite unhappy with my second round of blood tests. On antibiotics for ten days and my white count went up.

The emergency room was less an emergency than doc knowing that outpatient tests the day before a long weekend will take too long to get results back. We can do all this in one day — all day.

Lots of waiting, questions, the attending doc throwing out scary terms like “lupus” and “fibromyalgia,” the resident looking at me ever more perplexedly as I answer his questions in the opposite way he expected. More Xrays. Another CAT scan, this time with an injection of contrast dye. Dave the tech sticks in the IV, takes six vials of blood, and makes me laugh. Kim the nurse takes my pulse and temp and blood pressure (three times), brings me coffee and two box lunches without the turkey, and looks out for me and makes me feel at least somewhat calm amidst the chaos.

And five hours later we’ve found it.

More scary words. Biopsy. Surgeon.

David tells me that he thinks 2cm by 2cm sounds small. The size of a peanut. To me it sounds gigantic.

Funny. I’ve been hurting less. Coughing more.

My life is out of my control. No one has any control. I need to be in a safe little box and there isn’t one.