Monday, June 1, 2009

Phantom Limb Syndrome

So... there's a very common syndrome associated with losing a limb. It's called phantom limb syndrome. The missing limb, say an arm or a leg, continues to ache or itch long after it's been severed. It's wholly psychological and, although the wayward limb is not there anymore, the brain continues to think it is.

I - apparently - have phantom nipple syndrome. I continue to get the sensation that my now missing nipples itch. It's in the same spot where my nipples used to be, and I know that they're no longer there, but I am continuously haunted by the memory of having nipples on my chest. And the bitches itch something wicked.

Odd, huh?

And, lest you think I'm being silly and just writing to be funny, I want to assure you in no uncertain terms that I'm totally serious here. I honestly awoke from a dead sleep last night with a wicked itch in my right one. My right nipple, by the way used to be the one that would bother me. Even the lightest irritation would drive me crazy with it. I once ran the Cleveland Winking Lizard Shot in the Dark 4 Mile run and my right nipple was rubbed raw by the time I got to mile one. My only memory of that race, besides the great after party at the Winking Lizard Tavern, was of the rubbing of my cotton shirt on my nipple for 3 GODDAMNED miles.

So, anyway, where did I leave off?

I was explaining my life after waking up from my double mastectomy with sentinal lymph node removal. I don't remember if I told you, but they pulled about six lymph nodes. And, in terms of my recovery, that's where I have the most pain. My left side, where they just removed tissue and didn't fuck around with my lymph nodes, is - for obvious reasons - doing much better. I have some serious pain under my right arm pit. One of the surgical residents said it is most likely because they twanged a few nerves while removing the lymph nodes. All I know is that, if I shift the wrong way, it hurts like someone's stabbing me in my pit. The first few times, I froze and did that thing where you breathe through your teeth because it hurts so bad, and wondered aloud if I'd actually tore some stitches or something.

I spent the first night after the surgery in the hospital, and that first night was a blurred memory of pain and discomfort. Here's an odd little quirk of male psychology for you... 95% of men, no matter how bad they have to go, can't take a piss while lying down. My night was spent trying to pee... calling the nurse and receiving no answer... and finally cranking myself up in my delirium and pain to try to pee into a urine jar. I'd push the buttons on the bed, it'd grind up to a close to sitting position (but not close enough to approximate sitting on a toilet and letting my body think it was okay to pee), and then spend the next forty minutes grunting and pushing... only to have my body refuse to release. And then, finally, it would reach a point where I couldn't hold it anymore, and I'd finally, blissfully pee... only to realize that I had more pee than the stupid bottle could hold and I'd have to stop with my bladder only half empty. The only thing that would help is that the nurses would come in every couple hours and blast me with some Dilaudid in my IV and I'd pass out.

And here's my biggest complaint about the whole situation...

I understand I'm a dude, and that I may have been uncomfortable being put up in the McDonald's Woman's Hospital overnight. But it would have been nice to have been asked. I'm quickly learning that the Woman's Center is much more adept at handling my type of surgery and the after effects. So, instead of putting me up at McDonald's, they put me in a regular room in the Mather Tower with nurse's who had no understanding or empathy for a man in my situation. In fact, they were more concerned with getting me out of the room and released than making sure I knew what to expect or how to do things once I got home.

Take my little jugs, for instance. I'm referring to my drains. They are two little jugs that I have pinned to my shirt and lead up into my chest cavity to pull fluid out of my wounds. The nurses in Mather Tower had no idea how they worked and rather than admit it, showed us how to set them up incorrectly. So I spent my first day and a half at the house in a considerable amount of discomfort with fluid build up in my chest.

You see, they're supposed to work on suction and, if you don't pump them up right and establish the needed suction, cool things like sepsis and blood clots can happen. We learned this after the home care nurse came at 5pm the day AFTER I'd left the tower. She pumped them up right and it was like someone had turned on a vaccuum hose. I pulled three times as much blood and fluid out in the first four hours as I had over the last two days.

And the whole drainage tubes are the bane of my existence now. My life revolves around checking the fluid levels and longing to have them removed. That, unfortunately, won't be happening until next week. I have nightmares of my dogs accidentally jumping on them and pulling one of them from my chest. I catch them on the little knobs on the front of the bathroom sink when I brush my teeth. I am constantly snagging them on chairs, doors, and the edge of the bed.

And the suction is a wholly uncomfortable feeling. When they are first pumped up, they pressurize the skin under my chest and it is a painful, weird feeling. Like a worm twisting in dark, freshly turned soil, they move and squirm and adjust to the new pressure - which brings more pain and more discomfort.

Now, some four or five days after the surgery, the throbbing, achy soreness of damaged tissue has started. And I'm terrible at gauging my own pain.

I have a really high threshold for pain. On that stupid 1-10 scale of pain, a two for me is probably a four or five for a normal person. And I'm fine with it and can cruise along and take it until I reach about the 4 or 5 period. But then I've overshot the window and I go right to a 10. Michelle says it's like flipping a switch... I go from normal to shaking, withdrawn, and cranky in a matter of moments.

And it's largely my own doing. I'm not one to take superfluous medication, even when I obviously need it. I'm a dumb boy, and that's what we do. I've been trying to be tough and strong, when I've been out of surgery for less than a week. And major surgery at that....

Today, I received probably the best advise so far from one of the home care nurses. She said that I should maintain my painkiller schedule no matter how I'm feeling. And, mostly for the sake of my marriage and my wife, I'm going with that.

Michelle, by the way, has been incredible. She's been taking care of me, and draining my tubes, and dealing with all of my pigheaded stupidity for days. I've been so lucky to have her and my only moment of weakness in this whole thing has been for her.

We were dressing me at the Mather Tower because they HAD to get us out of the room... and, as she helped me put my pants on and get dressed, I started to cry in anger and frustration at the whole situation. I'm sure it was as much pain and painkiller induced as it was emotional, but it seemed so unfair and ridiculous that she should have to be dressing me and taking care of me. We're both young and in our thirties and the whole "in sickness and health" bullshit shouldn't be something either of us had to deal with so early... and yet there we were, trying to get my underwear on in a hospital room. I was barely helping and she was being so loving and so patient.

I don't know what I did to deserve her....


glittergirl said...

you deserve her, and she deserves you. totally.

Revolverkiller said...


you both rock

and when i am reduced to a drooling Hawking i know that my GF will be there to do the the rate im going its bound to happen


tru_stories said...

Amazing what love can get you through i wish u all the best^^