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 go...it'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. 

Friends Don't Let Friends Shoot Up Alone // On Being Sick in Palo Alto

Pratik was out of town at a conference last week. He offered to cancel due to my PICC line, but I insisted he keep his plans. I'm determined to do my own treatment, much as I hate it. I was really upset when I had to call him from work due to Faint Gate 2014, so I was insistent that he attend the conference as planned. (Plus, Hillary Clinton was the keynote speaker. He loves the Clintons, and I couldn't let him miss that.) His work is important to him. I don't feel like I come in second to it, but I do know that his work/company/passion is equally as important to me. I'm ever the independent one- I'm not bothered by his long hours and attachment to technology. Something I appreciate about our relationship is that we both value not only our own independence, but we value each other's independence. We like to see each other thrive in our own interests (for lack of a better word. Hope this doesn't turn into the time I told him I liked to watch him "tinker" at the lab during his PhD studies...apparently not a great choice of phrase).

Due to The Fainting Incident, we asked our good friends C+E to be on standby in case of emergency. I was still confident that despite the incident, I could carry on doing treatment myself. However, I just wanted to make sure someone knew they might receive a "hey, I fainted" phone call.

Our friends went above and beyond--they called every day, provided me with dinner (and chocolate) twice, and even let me shoot up at their house in the dining room window in full view of the neighborhood. Friends don't let friends shoot up alone.  They really went out of their way to check in on me. Really, I shouldn't be surprised...it's the kind of people they are. They aren't satisfied with a simple phone call to make sure you're not unconscious on the floor. They want to know you're alive AND well. They want to make sure you've got a meal and that you're in good health. I don't often "take the help", but I'm trying to do so before I corner myself into another situation. If there's anyone that can make you feel at ease about accepting help, it would be C+E.

What I love most about them (always have) is their tongue-in-cheek attitude about Palo Alto. They were the first permanent residents of this town that I got to know well, and they completely acknowledge and embrace PA's wackiness. When I first moved here, I felt out of place. (When you're living in an apartment a mile away from the home of Steve Jobs and parking your 1999 vehicle next to a Maserati, it's impossible to ignore how surreal the situation is.) Ironic, because I never felt like I fit in in my own hometown. I fled to California because I'd always felt it was where I'd belong. In moving to Palo Alto, however, I quickly began to feel out of place again. I wasn't quite sure how I'd traversed my life to get from rural Michigan to here but I was certain that, despite being well-traveled, I had "fraud" written all over my face and that this writing was only visible to Palo Alto's elite. The feeling wasn't totally based on our own socioeconomics. It was more that blatant wealth combined with being a hub for some of the world's greatest innovators has created a culture more foreign to me than any I'd ever experienced abroad.

Because of C+E's acknowledgement of the "surreal life" of Palo Alto, I began to realize that not everyone lives in the bubble. I loved the way they described raising their kids here, avoiding the entitlement pitfalls that come with the territory of one's high school being adjacent to Stanford campus. I loved the way they embraced who their kids really are and didn't make them fit into the same Silicon Valley mould many parents here seem intent on shaping their kids with. I loved their hilarious tales about how their neighborhood has evolved over the years, and most of all I love that they flat out say: this town is weird. And they don't just stop at saying it: E details Palo Alto's wackiest news stories and police blotter blurbs in their yearly family newsletter. I credit them with helping me feel at home here. It seems that this is a place for my brand of weird, too.

There's more to the Silicon Valley than being the epicenter for the shit you see on the news...there's the rest of us that have to live in its wake. We think it's effed up, too. Yesterday I was passed by a Ferrari. While it may never cease to be surreal seeing such a thing of material beauty up close, I was at peace with it. I may be accustomed to doing the passing (after all, you can overtake a John Deere in pretty much anything with a gas pedal), but I was at peace with letting the Ferrari get ahead of me. Because my 2011 Mini Cooper and I live here, too.

California has been so good for my health. I kiss the ground of the land of the fruit and nuts because not only is it thawed (everyday!), it doesn't pose a threat to me as I walk. I no longer have shooting pains in my leg from the cold air and a tensed gait as I ease my way across the ice. Even though I dreamed of ending up here, I am still bewildered that it came true. Bewildered, but eternally grateful. The weather lets me maintain my independence. I may feel like I belong here because I elbowed my way in, but my legs are all the more appreciative that I did.

And after all, no matter where you live, there's always something screwy going on to judge the neighbors for. Am I right? And we all take turns being that neighbor...sometimes we're that neighbor with the Ferrari, and sometimes we're that neighbor in her pajamas teetering on a cane while trying to pick up dog crap in a plastic bag as IV tubes dangle out from under her PJ sleeve...


Thank you, C+E, for always being such great friends to us. Thank you for going above and beyond the call of duty last week. Thank you for making us feel at home here and for being like family. My experience here has been enriched because of the two of you. Thank you for being, as it was put, "the nice family".

And above all, thanks for the chocolate when all I expected was triage!