Broken Doll

And along my nerve endings. That’s as good a way to describe it as any. There is a lump of static-acid not-quite-pain, not-quite-nausea sitting in my chest, spidering out to my stomach, shoulders, arms, thighs. Sometimes it gets so bad that I get flushed and hot, I sweat, I pant for breath, just sitting in my chair. A week later it’s usually faded, but it’s not going away now. It’s constant, energy-sucking. I want to throw up. I want to lie down. Neither happens so I might as well be at work and miserable as at home and miserable — no difference.

I want it to stop. This isn’t just feeling “run down.” I feel sick.

So in the battle of the dueling side-effects, guess who lost? Weight loss, of course.

Of course starting out 15 pounds heavy from winter holiday over-indulgences didn’t help.

Being physically incapable of a brisk 10-minute walk doesn’t help either.

I gained 5 pounds in the two weeks between chemo session number 4 and chemo session number 5. So now 20 pounds too heavy, and projecting similar weight gain for the rest of this hell until I am (hopefully) finally allowed to not have the nurses poison me every other week, that puts me at oh… 50 pounds overweight.

Did I mention that this is nearly the entire amount that I finally lost 8 years ago?

Lovely fucking irony that the one possible side benefit to this hell — losing a few extra pounds — isn’t going to happen. Lovely fucking irony that I’m gaining weight in spite of the fact that I barely eat 4 or 5 days out of 14.

I am panicked enough that I want to start running again. This may be hampered by the fact that I can’t walk, slowly, for half a mile without breathing hard.

So it’s not just robbing me of the year I have to deal with treatment and recovery. I’ll have to lose the weight before I can even start going back to the things I love. Am I going to spend $500 on headshots of the fat girl? Am I going to just audition for the role of the fat loveable sidekick? That’s not me and not my life. I fucking want it back. And how long will that take? Seventy pounds took me almost two years the first time around. Two fucking years.

I’ll be fucking starting over. I did not bust my ass for those two years just to end up back in the same god-damned place.

I look at myself in the mirror at night before bed. My arms are thick, my belly sticks out, I look like a bloated jellyfish. My hair now looks something like a halo you can barely see. My chest and neck are scarred up and there’s this latticework of big blue veins spidering all across the left side of my chest. Who would even want to touch this thing in the mirror? Who would want to even so much as fuck this?

So we had one of those relationship conversations where I’m not surprised by anything he tells me, he doesn’t tell me anything I don’t already know, and I’m stunned by how much it hurts me to hear it anyway. It hit me like a punch to the face, and I say nothing, because what am I going to say? “Actually, I thought I was okay with this, but I want to change the rules”? Well, he doesn’t, so it’s a particularly useless thing to say.

And there’s nothing to do about it either. If I leave all I’m doing is depriving myself of his support and whatever small physical comforts I get now, and end up with nothing. It’s not like I’m able to just run out and find someone else while I’m sick, bald, fat, and ugly. It’ll be months, at least, before that’s even an option. Nevermind that I fly under everyone’s “has potential” radar even when I am healthy. Nevermind that I can’t fall for someone while still in love with someone else. Even after being dormant for months — I honestly thought I was okay — those feelings remain and fuck it, if after three years and all of this they still won’t let me go, they never will. They never will.

For the first time since all of this started I find myself wishing it had just killed me before we found it. At least I’d have been happy when I died.

I’m so tired I feel like I can’t put thoughts together, but I’m still awake.

Last weekend saw the end of any pretending that I’m not going bald. The wig has come out full-time now.

But at the end of the day, I still have to look at myself in the mirror. My hair is so thin. My scalp is clearly visible. I look old… like I’m about 80 years old. Squashed down from being under a wig for 12 hours, it looks patchy. I look sick. I look like shit. I look fucking ugly.

I’m having trouble dealing with the wig. Even just in practical terms. It’s hot and a bit scratchy. I feel like I’m wearing a helmet, all day, every day. It took me two days to figure out that it was the hairnet I was wearing underneath that was giving me the tremendous pressure headache. I still haven’t figured out the happy medium between my-hairline-is-slowly-sliding-backwards and I-have-a-nasty-headache-right-behind-my-ears. The bangs hang in my eyes and won’t stay swept to the sides. The ends get super tangled by the end of the day and I worry, constantly, that it looks ropey and unnatural. The aforementioned sliding hairline means that I’m constantly adjusting, constantly worrying, which I’m sure looks weird and does nothing for my peace of mind. The tangled hair in the back and at the nape of my neck takes 15 minutes or more to comb out every evening. I’m super-careful, super-paranoid, about combing slowly, picking apart bad tangles with my fingers first, slowly combing through them til they’re gone, and still I get a few strands coming away at the end of it all. Less even that what I’d normally lose of my real hair, but I’m still paranoid because I know that this hair won’t be growing back. Is this normal? Or is it going to start looking tatty within weeks and there’s not a damn thing I can do about it?

And then there’s the emotional stuff. I can’t pretend it’s not happening anymore. And I have to deal with this transition of going from pixie-length and wavy to 18 inches and straight literally overnight. So far the only people who’ve seen this happen have been people who already know the story. But I have no idea how to handle others — people who know me incidentally, who know me by sight if not by name, and who have no idea why I cut my hair short in the first place. I’ve been walking around with short hair for almost two months, many people have seen it that way. So what do I say to the wait staff in my favorite restaurant, my neighbors in the apartment below, when they see me again and ask what the hell happened to my hair? For total strangers it wouldn’t matter, they probably will never have any idea that the hair isn’t real so I can say nothing and pretend that it is, but these people will know, and will wonder why, and I can’t think of a way to answer that question without it being completely, utterly awkward.

I won’t lie, but can you imagine how flustered you’d feel if you saw it happen, were shocked enough to ask, and then were told, “Oh, yeah, the chemo was making my hair fall out,” from someone that you really only barely know?

I can’t pretend it’s not happening anymore. I don’t know what to do.

Rant rant rant.

I am trying to be upbeat about this more often than not but it is really wearing thin. Yes there are good things. My liver enzymes are back to normal. This will almost certainly not kill me. But I am really fucking sick of:

• feeling like shit all the time. I feel achey. I am tired. Walking the three blocks from the El to my office wears me out to the point of breathing hard. Yesterday I unpacked a single small box into a drawer, and had to fecking lie down afterward.
• it takes longer and longer to recover. A week at first. Then 10 days. Then 12. I get two lousy days of feeling somewhat like normal. The entire week of work after treatment sucks because I feel constantly sick, even if it’s a low-grade thing rather than an acute thing. I am scattered and can’t focus. I lose track of things. I feel like I can’t keep up. I want to lie down.
• side effects. Constipation (magnesium salt laxatives are vile). My hunger mechanism broke two weeks ago so I might get hungry when I need food, or I might simply get queasy (a sure-fire way to encourage me to eat, right). Nosebleeds. And its own separate bullet point…
• hair loss. At this moment in time I’m all pissed off because I cut my hair short because they told me my hair would go all at once. It did not, and now I feel like I will never quite be able to tell when it shows, when it’s time to break out the wig, because I can’t see the back of my head. Does it look thin now? I can’t even tell. And I HATE myself in short hair. I see photos of myself and don’t even recognize me. That’s not who I am. Oh, and I’m losing hair in other places too, which makes me feel weird.
• I want a fucking salad. A huge one in a bowl bigger than my head. I want raw produce. I want to eat strawberries and blueberries and cherries and all the really good summer produce I’m going to miss out on because eating it raw carries too high an infection risk with my compromised immune system. Cooked squishy vegetables are disgusting. I never want to see another bowl of soup as long as I live. Canned fruit sucks.
• I haven’t exercised in weeks, because I’m too sick to. It makes me feel fat. My only consolation here is that the weight gain vs. weight loss side effects of the two different chemo drugs are apparently balancing each other out, and I remain more or less stable. What’s not cool is “stable” still contains the 15 pounds I gained over the winter holidays. So, technically, I am fat and can’t do a damn thing about it for the forseeable future.
• I have at least two months of this left to go, and probably four. If I’m this frustrated now, what’s it going to be like in four months?

I want to be done with this. I hate it. It’s debilitating and it gets in the way. It’s fucking ENDLESS and it’s sucking up an entire year of my life.

Fuck cancer. Fuck chemo. Fuck being sick.

…which, ironically, upsets me a bit because it has taken this long to get here. Twelve days. I have today and tomorrow to enjoy this before I go back to chemo and start all over again. And “enjoy” might be a bit of a stretch since I have so much shit to do, and increasingly fewer days in which I feel good enough to do them.

But I am incredibly grateful — I am pain-free. I remember a time just a few months ago when I worried that I would never again know what that felt like. And it feels good. And I’m so happy about that. There is only that weird static-like not-quite-painful sensation that comes on during the ten-to-twelve days after chemo. There are no words to describe that. It’s not exactly pain, not exactly nausea, and “discomfort” is just too vague. I can’t even think of anything to compare it to — it’s like nothing else I’ve experienced. How to get people to understand what that feels like… how much it cripples me in small, subtle ways? I can’t.

But every once in a while I do notice the lack of pain. You become so used to thinking of painlessness as the default that you forget that it feels like anything. You don’t notice. But I do.