End of Year Reflections – Or, Why You Can Blame Carl

In my religious tradition, the end of the year is a time for reflection and contemplation; what happened over the course of the year, how will it influence your upcoming year, what lessons did you learn, how will those be implemented, and so on. It’s generally a relatively quiet thing – and yes, should be done according to the lunar calendar, but I’ll be the first to admit that I’m going cultural on this one.

And so, it was with reflection at the end of the year – admittedly done in an earlier time zone, since I actually spent NYE in Brooklyn with friends – that I tweeted a simple but very heartfelt sentiment: You know, Twitter basically changed my life, several times over, this last year.

Almost all of the opportunities I’ve had this year, I can trace directly to being on Twitter. Now, of course, there’s the Seneca quote that says luck is when preparation meets opportunity, and some could argue that my preparation was key to jumping on opportunity, but the reality feels quite different for me. What I experienced was reaching out to a new world of people who were warm and welcoming and encouraging, and gave me just the smallest pushes I needed to start pursuing dreams I didn’t realize I still had.

One of the biggest examples of this would be a random discussion with science artist Michele Banks that ended up looping in Bora Zivkovic, the blog editor at Scientific American; one thing led to another and I found myself being strong-armed, in the nicest way possible, to submitting a proposal for a Science Online. Which led to my proposal being accepted, and introduced me to my co-presenter, Judy Stone, an internal medicine and infectious disease doctor with a speciality in clinical trials who also writes the utterly marvelous SciAm blog Molecules to Medicine, where she has most recently been tackling the Dan Markingson case.

Another example would be Paul Knoepfler. Paul is a researcher at UC Davis, and he also runs the amazingly informative blog IPSCell, which is a must-read for anyone interested in stem cell research. Paul covers it all, from explaining the latest journal news in accessible terms to covering the often contentious legal issues of the field. I didn’t realize just what a rock star Paul is in the field until I was at the World Stem Cell Summit in Florida, though. He really is that guy who is always surrounded by people who just want to say hello so that they can say they’ve said hello to him. I consider myself really lucky to have such an influential person telling me you know, I should keep writing, I say interesting things.

This in and of itself – being accepted by science-y types on Twitter, talking to really interesting and fun people without feeling self-conscious – would have made the year amazing. None of this, though – talking to any of the people already mentioned, or the numerous other interesting and intelligent and engaging science and ethics and research types that I do talk with on a near-daily basis – would have been possible if not for one person: Carl Elliott.
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Found Those Million-odd Pieces

Oh, I was doing so well until I wasn’t. But at least when I wasn’t, I was really committed to it.

I’m not sure what threw the anxiety into overdrive today, but by about 10am I was a quivering mess. And once again, it wasn’t so much the potential diagnosis as it was not knowing what was going to happen in the afternoon. I suppose my primitive brain assessed threats and figured that not knowing this afternoon was a more immediate concern than what may come from that test.

As for the biopsy itself – well, I had been tempted to live tweet it. Let’s all be grateful I didn’t, as I would have had to expose you to proof I’m a sailor’s daughter (I certainly swear like it), and then probably just would have slipped into somewhat mindless screaming. It seems that my cervix is as contrary as the rest of me, and a procedure that should have taken five minutes took closer to 25, and involved seeing stars at several points – and not the fun kind.

Never have I been so grateful for the deep breathing practices of my religion.

Of course, all this means is that the first step is done. The ob/gyn was honest: she’s not sure what’s going on, but the ultrasound images are concerning. The next step is the biopsy results, and from there we’ll figure out options. The results themselves won’t be in for a week, perhaps more at this time of year. I’ll call Thursday and she’ll either have the results or know when I should expect them.

Which yes, means that at minimum I have several more days of riding the roller coaster of anxiety, wondering if my bitchiness is the inherent or stress-induced variety, and trying not to overreact too much in the opposite “experience all the things” way.

A Million and One Little Pieces, Minus the Million

I expected to fly into approximately a million little pieces, give or take, by about 3pm Friday afternoon. In fact, I was so convinced that this was going to happen I began pulling things together to go home, because I am constitutionally incapable of falling apart at work, and I figured the strain of that was going to be more than it was worth (especially given the amount of sick time I still have). It’s not even so much anxiety of what may be, as it is anxiety at whether or not there even is an issue. There’s a bit of a running joke in my life right now that I generally make a decision and then act on it within 24 hours, and if I don’t, things get Not Pretty fast. Right now, I’m stuck in that zone of needing to make decisions but not having enough information to do so, and I anticipated it doing a real number on me, leaving me gnawing on my liver with worry and spinning into tighter and tighter circles of bad thoughts.

To my surprise, that hasn’t been the case.

I think that a large part of the reason I’m not looking for a good chianti to accompany my doom and gloom is because I’ve been learning better coping mechanisms. A few weeks ago I watched someone “crowd source” an emotional/personal problem. This was a cute term for a simple concept: reaching out to friends for support. And frankly, within my life – and experiences over the last half a dozen years – about the last thing I would have ever considered doing, had I not seen how beneficial this crowd sourcing was firsthand.

It would have been very easy to simply sit in the middle of my bed, squeezing a cat or – if they got irritated, a stuffed animal – and rocking, between sleep cycles, but that doesn’t really help anyone, let alone help me. In another of what appears to be a series of hard events, I reached out and said “here’s what’s going on, by the way,…” and received back precisely what I needed: quiet support, from being asked details of everything to come to getting a recommendation for Booker’s and the distraction of getting to the bottom of the bottle, and everything in between.

Bravery and anxiety are two words that have been repeated a lot to me the last few days. I must be so anxious, I am so brave. They’re understandable and kind, and in that order – but not entirely accurate. I am certainly anxious if I focus and dwell, and I suppose I’m brave – at least by the standards of the people who say so, although I certainly don’t see it as such. But mostly, though, I’m surprisingly okay. And I think a lot of this is because I took the time to simply be honest, to not hide behind the social niceties that say we don’t talk about it when we’re maybe sick, waiting on a diagnosis, hanging out in limbo – and especially if it’s a limbo around lady bits because ew, who wants to talk about THAT in polite company?1

And if you can manage, I highly recommend having someone around whose voice alone soothes you, and whose conversation successfully distracts you. I am fortunate enough to have someone in my life who has this, combined with “being there,” down to a science, who can easily shift between talking about fear to discussing effective bioweapons disbursement,2 pop culture and movies, or even traditional religious things like, say, seppuku.

Then again, there’s also the sheer practical: I’ve been getting by on only about 90-120 minutes of sleep for the last three or four weeks; by Saturday evening the pleasures of seeing friends who had already planned on being in town, combined with other stress from my family, knocked me out and I actually got a solid seven hours of sleep.

Tomorrow is a work holiday luncheon; I go straight from there to the ob/gyn. Here’s hoping they can do the biopsy immediately, and that I’ll have results before Christmas – for a lot of reasons, sooner is so much better than later. Not in the least of which is, that while I am not chewing on my liver, my nails are another story entirely.

  1. Admittedly, many of you are bioethicists, which I believe makes you not terribly polite company regardless of nationality-based jokes. That’s okay, the rude and loud and opinionated company is much more fun. (Billy Joel agrees with me, too.) []
  2. Hi. It’s not that scary when you consider the respective academic interests involved. Honest. Just on my own, I’ve been researching and writing about mass casualty and bioterrorism for years. Really, spooks and suits reading this. Check your files. []

I Had Two Ultrasounds This Morning

I had two ultrasounds this morning. Your standard, fill-your-bladder-and-let-them-press-really-hard-because-haha, ultrasound, and a transvaginal ultrasound. So, obviously, the intent was to stare at my uterus. I’ve been suffering from menorrhagia off and on for a while – more on than off of late – and given the family history of fibroids, it seemed likely that was the problem. Perhaps endometriosis. Either way, the fix was simple and convenient (a Mirena); I just needed the ultrasounds to get that rolling.

I had two ultrasounds this morning. The radiologist is on-site, and the technician thought it was likely that my scans would be read by this afternoon, although the doctor probably wouldn’t look at them until Monday. Fair enough. I already had an ob/gyn appointment scheduled on Monday, so timing worked out well – electronic health records can be a pain in some regards, but in this case they were certainly working out in my favour.

I had two ultrasounds this morning. I was done at 8:30am. My doctor called me at 11am. It’s not fibroids. It’s not endometriosis. It looks like polyps. It looks like endometrial hyperplasia. It looks like a lot of things that were in the 10% or so category I didn’t even consider. It looks like my ob/gyn appointment will be discussing biopsies and curettage and a lot of things I don’t know enough about to spend time on the internet researching because I’m going to give myself WebMD Syndrome.

My primary care doctor did her best to adopt Doctor Voice, steady and reassuring. Hard to say, could be bad, could be benign, the important thing was to get the process started quickly and to be prepared for this to move very fast, if necessary. Hopefully it wouldn’t be – hopefully this will be a monitor and treat (with hey, a Mirena – see an on-going theme?), but I needed to be prepared.

It’s a Friday afternoon and I’m not entirely sure how I prepare for this. I tried to see if I could get an appointment today (lesson learned – no more diagnostics on a Friday), but my ob/gyn wasn’t available. Monday was the soonest, and hey, I have that. So now I have the weekend to prepare for I’m not sure what – while they typically do biopsies the same day/in office (at least per my sister), there are just too many factors to know and “prepare” is such a vague and frankly ominous word.

So instead I have to sit, and think, and be with my thoughts. For a good Buddhist, this might not be an issue, but as we have discussed in the past, I am a very bad Buddhist.

I thought about just staying quiet. A few people, I told – the ones I would interact with over the weekend and know me well enough to know something is off. But I could just swallow everything with this, the fear and terror, the memories of my mother, and wait it out. I’m already not sleeping, so what is a little more stress?

And then I thought, of all people, of Xeni Jardin. I don’t know Xeni. I don’t tend to read Boing Boing. But you cannot live on the internet without knowing how she faced the possibility – and then diagnosis – of breast cancer. In fact, I had been thinking about how Xeni live-blogged her first mammogram as I was walking in to the ultrasound suite, and joked with the technician that I should tweet the ultrasounds, a sort of “what’s it really like” thing, because of the politicization of transvaginal ultrasounds this year.

I don’t pretend I am a Xeni Jardin. And I will be honest: I hope that I will have at most a week of uncomfortable rattling around in my head, thinking about how Mom was diagnosed with cancer almost – no, I’m sorry, exactly six years ago today. That? Is actually – I’m not sure if I’m laughing or crying, but I kind of suspect both.

In some ways, that’s a bit of a confirmation of what I was going to say, which is that I hope I will have at most a week of uncomfortable rattling around in my head, thinking about Mom and her cancer diagnosis, which is probably going to kick me to do a bit more writing of the kind I was doing six years ago. More narrative and emotion, more reflecting and self-reflection. And I find that what I wrote six years ago, to the damned bloody day, still holds true now:

I wasn’t going to write about this, not at first. It doesn’t belong here, it’s a personal experience, it’s not what people expect, if at this point there are any expectations. But I realized, while talking with GM this morning, that we don’t have the language to express what we’re thinking and feeling when someone tells us that their loved one is very ill. And I’m not sure we have the language to talk about it, either. We certainly don’t have the culture, in either case. And maybe this isn’t a healthy thing. Maybe it’s just another symptom of a sick society, and the cure is to challenge the norm of ‘I’m so sorry” “thank you” and actually move towards something more.

Once again, I found myself having to make a choice, having to decide how to define my interaction with important people in my life. With blogging. With Twitter. Once again, I could step up to the plate, be more aggressive than I might normally be inclined towards, and be honest – painfully honest – or I could simply walk away. Turn into a ghost and just disappear.

This is one of the hardest things I think I will have ever typed.

I had two ultrasounds this morning, and I am afraid.