Suffer for beauty

First, the good news: I'm walking! I'm up and about! I was cleared a week ago by the orthopedist to be fully weight bearing on my left leg. It felt so strange at first, like my left leg couldn't remember what to do, and I was as wobbly as a newborn foal. I was supposed to wean myself gradually off of crutches, first using both, then one, then none. Know how long I used them after my appointment? About two hours. As soon as I got home, I felt steady enough to gimp around the house without them. They were banished to a dark basement corner, along with the walker, and that is where they shall stay.

I'm a bit slow, and bit stiff, and my left leg is 3/4 the size of my right, due to muscle atrophy after six weeks of non-use. But I'm walking. I can do things again. I get stronger every day. I will start physical therapy soon, and I will get back to where I was. I will. I'm stubborn like that.

My appointment with the plastic surgeon on Tuesday was not as great. He took a look at my head and said, "It's time to schedule another procedure. Soon." I felt faint as the shock set in. I sat very still and willed myself to breathe so I wouldn't actually pass out. The healing of my head has plateaued; it's not going to heal completely on its own, despite the best efforts of the surgeon and his team. The original wound (9 x 6 cm, remember?) was just too large.

So, it's a skin graft operation on Monday morning. They will take a patch of skin from my hip and graft it onto my head. The good news is that this type of superficial skin graft heals quickly. The donor site feels like "bad road rash" according to the surgeon. I thought, well hell, I've done THAT to myself (out running, of course, and wiping out, ha ha ha), so I can tolerate this. I'm pretty sure that when they remove skin surgically they don't rub gravel in it as with actual road rash, so this should be just fine.

The bad news is that this is just the first step. This is an intermediate step, just to get what is essentially an open wound to heal. At least two more surgeries are going to be required to fully repair my head and restore my hair. It could be more than two. It all just depends.

I'm not sure I've fully described the damage to my head, both from the original wound, and from the attempted surgical repair, which wasn't exactly an emergency, but was urgent, as I had a 9 x 6 cm hole in my head, exposing my skull. Basically, I now look like a Golden Retriever with a bad case of mange (you may not want to Google that). I can't stand to look at myself in the mirror for more than a few seconds, without the dressing on my head, without a hat. I've lost so much hair, in a jagged inch-plus wide strip over the top of my head, where you'd wear an Alice-style headband. There are huge bald spots of reddish, raw flesh. Scars. I look away, anywhere but at my head. My hair fell out in clumps in the weeks after the surgery, a result of the skin being stretched too tight, because there just flat out wasn't enough skin. It won't be growing back.

I can't live like this. I know that. I am not, cannot, wear hats and scarves, or even wigs for the rest of my life. I won't. I am going to endure what I have to in order to fix this. But scalp wounds are problematic; the hair on your head grows only on your head, so a simple graft from somewhere else doesn't solve the bald spot problem.

Once the skin graft heals fully, the next step is to surgically insert a tissue expander. This is essentially a balloon that will be inserted under a portion of my scalp, with a valve on it. The valve is so the doctor can gradually fill the balloon with saline, gradually stretching out the skin, so there is simply more of it. The tissue expansion process can take eight to ten weeks. That's eight to ten weeks of having a weird, unsightly bulge on my head, that I can hopefully cover with hair, hats, scarves. That's eight to ten weeks of weekly appointments to get more saline pumped into the balloon.

Once there is enough expansion of the scalp tissue, it's another surgery. The surgeon will do essentially the same procedure as the first surgery, the one right after the accident. He will remove the balloon, make incisions, and rotate the expanded scalp tissue to cover all the bald spots, hopefully leaving me with hair everywhere that I want to have it. It is going to hurt. It is going to be deeply painful, for a few days. This was the procedure that left me sobbing with pain in the hospital even after oxycodone. They had to give me Dilaudid, which is pretty much the most powerful narcotic painkiller there is. It was the only thing that gave me relief. At least I will know what to ask for this time. At least I know it will leave me in such a haze that I can just sleep through the worst days of pain. At least the rest of me won't be bruised and beaten and broken this time. At least it will only be my head this time.

We hope that procedure will be the end. But it might not be. The plastic surgeon (whom I like a lot, I should say) assured me that he will do everything he can until I am satisfied with the result. After the expander and scalp tissue rotation, there still may be gaps or scars that can be closed up and minimized with yet another surgery. Yet another time in the hospital, under general anaesthesia.

I don't know how much I can take. I don't know when it will end. At least there is a plan now, and an end in sight. But the time that it takes, the planning, the inconvenience, the living with the unsightly bump from the tissue expander, the surgery, the aftermath, the healing, the endless daily dressing changes. (Side note: apparently, the breast reconstruction patients don't mind it so much, because the bulge is where a bulge is supposed to be. But on the head - Elephant Man.)

We have a trip planned to Disney World in mid-April. By mid-April, this first skin graft should be healed, and hopefully I won't have any more daily dressings to apply. Hopefully, I can just cover up with a scarf or hat and have fun with my family. After that trip though, I think I'm going to schedule the insertion of the expander. I don't want this to drag on forever. I tussle with also not wanting to miss out on things - my college reunion, summer with my kids. But waiting all those months until after summer is over is intolerable.

I want to be able to look in the mirror at myself. I miss my hair. I'm still so mad at myself for fucking this all up, for doing this to myself and my family. I don't know how I'm going to stop being mad at myself, or if I ever will be able to stop. The worst times are when I wake up in the early morning, and somehow, I'm back at that corner, back at that intersection. I want to go back and change my fate. Skip that run, stand on the corner for five more seconds, not be in such a rush. I watch the light turn yellow over and over, watch the traffic slow. I'm sure the light changed; I can't imagine stepping into that intersection if it hadn't. I wish I were sure.

But the only way out is through. Through this, all these surgeries, through the pain, through the ordeal, through the dark forest.

In one of my late-night Twitter howling sessions back in December, right after I got home from the hospital, the lovely and amazing @pantalonesfuego stated that her grandmother had always said you have to suffer for beauty. "With all you've suffered, think how beautiful you're going to be!" I responded "I'M GOING TO BE MOTHERFUCKING BEYONCE!"

So, onward, Beyonce-ward, through the dark to the kingdom of beauty.

Comments

You can follow this conversation by subscribing to the comment feed for this post.

Oh, what news. And what a journey you've been on and will continue to experience. Sending you warm thoughts and healing vibes. This sounds all very hard, and I know it's hard to remain positive all the time (which you always seem to be on Twitter). Just know it's OK to think it all sucks and is unfair and is the worse. Your feelings are valid. And you're beautiful today and every day, no matter what. :)

Posted by: A. | Friday, January 23, 2015 at 01:49 PM