Monday, March 17, 2014

To the Stumps // On Deciding to Keep My Toes

I'm keeping my toes for now, but it begs the question: what shoe size would I be if I didn't?
Tomorrow I'm having "surgery" to drain an abscess of fluid from the left foot. I suppose it's technically a surgery since it will be done in an operating room, though I have requested to skip the anesthesia since I have little to no feeling in my foot. They're hesitant to use the PICC line for anesthesia (no one wants to touch it if they're not in charge of it...fine by me) and I have terrible veins. At my recent MRI, they literally had to give up looking for a vein. Literally, the thought of stabbing around for a vein frightens me more than taking a scalpel to my foot as I watch.

The doctor was unwilling to "just take a syringe and stab" as I had suggested, and opted to do the procedure in a clean operating room to minimize the risk of airborne diseases. You know, the common sense way of doing things. From my understanding, the incision should be small and minor. The doctor is aware of my unwillingness to stay off of the foot, so it's not something I'm planning on doing and he seems fine with that. Many of our conversations revolve around the phrase "but in your situation..." I've met the guy twice and he already gets that there are different rules to my game, and I'm not always making them. The game requires much strategy and many workarounds. C'est la vie.

On a much more serious note, he gave me some foot for thought for a long term strategy: transmetatarsal amputation, or a partial foot amputation. Just taking the one infected toe is not a long-term option, as the rest of the toes would break down within 3 years. Instead, they would take all toes and part of the foot. This would require staying off of my foot completely for about 6 weeks, depending on how I heal. If I do not, the foot will pop open "like an alligator mouth" as he put it, and expose the remaining tissue and bone. (Thanks for the nightmares, doc.) A wound vac device assists with the healing process of this procedure so that the skin will close around the foot.

Only a few things sway me into the direction of this: for one, it would irradiate the infection I've long struggled with. (In the left foot. Bear in mind, my right foot is only taking its turn being good. It's taken its share of turns being bad.) For another, should my foot become infected in a more serious incident than I've ever dealt with before and my entire foot needs to be amputated, a prosthetic requires 50% more energy in order to get around. With the partial foot, I would only need 14% more energy to get around. (These are his numbers.) Finally, I have to wonder if half a "normal" foot would be better to look at than an entire dilapidated one. Those who only play by practical rules might question why aesthetics comes into play at all but believe you me, say the words Manolo Blahnik and you can take both feet, no questions asked. Try having a penchant for fashion without being able to express it on your feet. It's like waving scotch in front of a recovering alcoholic.

Right now, the NO tally has many more checkmarks, and my doctor has emphasized that he knows it is a big decision and that it's mine to make. For one thing, I already exert more energy than the average person to get around. I won't know how much energy I will have to exert after amputation until I cross that bridge-if I ever do. For another, I've already lived with these conditions longer than I've lived without them and with each new doctor I meet, their words are always that I'm in "better condition than I should be given my situation". I'm always being told how things COULD have gone, rather than how they have. Taking care of my health has not always been at the top of my list, so I realize that this is a major streak of luck. However, playing my game by my rules has served me thus far. Who's to say that I won't get another 30 years out of this foot? Because I haven't yet met a medical Nostradamus, I'm willing to take the "risk" of my status quo. Finally, where surgery is involved my body doesn't seem to like to play by any rules at all. The doctor could tell me how the procedure and recovery will go, but there is no promise that this is how it will play out for me. In fact out of 12 surgeries, I can think of approximately zero that left me without other things to deal with. As it is I'm just bracing myself for tomorrow.

As is my surgery ritual, I'm making a list of terms to give to the surgeon before we begin tomorrow: that I am not staying off of this foot and that I will be going to Houston as planned in two weeks. No anesthesia unless absolutely necessary. Because refusing anesthesia seems like a normal thing to do, right? My mother likes to recall how she would be weepy in the waiting room as they wheeled me into each surgery when I was a child, but that she could hear me barking orders all the way into the operating room. I guess times haven't changed. Hey, if a kid tells you to leave the pain medication button off of the IV, leave it off. Sometimes well-meaning moms press it in the middle of the night and you're left wide awake with a stinging hand.

It is impossible for me (or likely anyone else in my family) to read this without thinking of my great Aunt Doris. Osteomyelitis was one of the many thing she struggled with growing up, so I had that in common with her. Multiple surgeries, hospital stays that stretched into months, and two parents who, for some unknown reason, refused amputation at a time when doctors were rarely questioned. As a result, she turned into a 4'10" powerhouse who practiced holistic medicine and died in her 80s with all ten fingers and toes attached. I don't often have the luxury of looking to others to see how my situation might's always a crapshoot. But she wasn't just somebody else. She was the person who taught me that the power to make my own medical decisions was indeed mine, and that there are more options than the ones presented to me. I might not ever be able to eschew refined sugars and poultry or any of the other extreme things that she did for her health, but whenever I make a decision that benefits my health I know it is because she empowered me (and many others in my family). She is definitely a guiding force each time I mull over these types of decisions.

I don't believe it was any coincidence that a gift from her presented itself on my doorstep this week. My great Aunt Peggy (her sister) had found a book with my name on it (written in her handwriting) among her belongings after she died a few years ago that she had meant to send to me, but never did. It was a book in German that she had likely picked up for me when I was studying it as a minor in college. To have something from Aunt Doris show up this week was a Godsend. To have it be an item that speaks to who I am, a wanderer, at a time when I really want to run but don't have the ability gives me hope. Between that and having to undergo just one more thing at a time when my patience is at capacity, I've already started planning another adventure. My life feels a little like quicksand: I have to keep moving, or else I am doomed.

Today, my toes are mine. I plan on keeping them for as long as I want them. I'm already slow enough, so I refuse to "slow down". My motto about my legs has always been run them down to stumps. 

1 comment:

Pratik Verma said...

awesome, thoughtful post.