Life as an Extreme Sport

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.

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.

When We Know “It’s a Catholic Country” Isn’t An Excuse

A severely ill woman is admitted to the hospital. Doctors assess that without an abortion, she will die.

Oh, you think this is about Savita Halappanavar, don’t you?

Well, it is and it isn’t. Savita Halappanavar is a horrific story making the rounds now; a young woman admitted to an Irish hospital was suffering a miscarriage but told that doctors couldn’t perform an abortion until after the foetal heartbeat ceased, even though the pregnancy was clearly ending (as Ms. Halappanavar was fully dilated and her water had broken; at 17 weeks there is no way the foetus could have been delivered and survived). Why couldn’t the doctors perform this medically necessary procedure — one that is actually allowed, in the Republic of Ireland, if there is a real and substantive risk to the life of the mother?Other sources via Wikipedia, sorry: Charleton, Peter; McDermott, Paul Anthony; Bolger, Marguerite (1999). Criminal law. Dublin: Butterworths. p. 518 and Herring, Jonathan (2012). Medical law and ethics (4th ed. ed.). Oxford: Oxford University Press. p. 308. Well, according to staff at University Hospital Galway, because Ireland “is a Catholic country.” So instead of performing a medically necessary procedure, doctors, nurses and medical staff at Galway Hospital watched as Savita Halappanavar suffered for over two days before the foetus died. At this point, they evacuated her uterus — and it was too late. Septicaemia had set in; three days later, Ms. Halappanavar suffered multiple organ failure and died.

That takes us back to the severely ill woman who was admitted to the hospital in December of 2009. A Catholic hospital in Arizona, St. Joseph’s Hospital and Medical Center. This young woman was 11 weeks pregnant and suffering from pulmonary hypertension. Sister Margaret McBride was the on-call member of the hospital ethics committee, and part of the care team that approved the abortion necessary to save this young woman’s life, even though abortions are not typically performed at Catholic hospitals.And, in fact, the hospital eventually lost their Catholic affiliation over this choice, because they refused to agree to never perform abortions again, placing the health and well-being of the pregnant woman over obsolete and medically inaccurate Catholic doctrine.

A Catholic nun at a Catholic hospital was able to make the decision that the living, breathing, suffering woman in front of her should not die because of a fatal complication of pregnancy. She did this even though the hospital guidelines specifically forbid abortion even to save the life of the motherAs noted here. Guidelines that are more strict than those in the Republic of Ireland. And while Sister McBride was automatically excommunicated under the Catholic concept of latae sententiae, she was also returned to a member in good standing of both the Catholic Church and her religious order.

So then, this isn’t about Savita Halappanavar or that unnamed Arizona woman; this is about that medical team. This is wondering: what is the excuse of every single member of the medical team at University Hospital Galway? I think at this point, we’re all waiting.

Have Your Sleep & Eat It, Too

I have insomnia. (Thus explaining the time this is being posted.) It comes and goes, as insomnia is wont to do, and I’ve apparently been in an upswing period of late. A friend of mine on the other coast, who blogs over at Geek Girls Rule, is also plagued by insomnia, and sometimes I think we trade off on who has to be awake in some sort of cosmic balance. We’re defenders of the night, each taking shifts to maintain vigil over the sleeping world, in case… well, I’m not sure in case of what, being that about the only weapons Mickey and I have are awesome racks and rapier wits, neither of which are likely to save the world from imminent destruction. But, I digress, which is common when I’m tired.

If certain dessert-makers have their way, Mickey and I, along with the rest of the Sleep is for the Weak Not Cranky club really will be able to have our sleep and eat it, too. It seems that the latest fad is melatonin baked into pastries, sort of a pot brownies for the convenience store crowd.

In an article of concepts that jumped out and did a samba for attention, the Len Goodman-pleasing number was the idea that the makers of these baked goods label them as “not for food use.” This appears to be the way that Lazy Cakes, Kush Cakes, and Lulla Pies (all rotten tomato worthy puns) get around FDA labeling laws. You see, while using melatonin as an additive in food would be regulated under federal law (and likely not allowed), dietary supplements don’t need what’s known as FDA premarket approval, and (more importantly) are not required to be proven safe or effective.

So regardless of the fact that we’re talking a sugary Ho-Ho hopped up on a neurohormone, it’s perfectly fine so long as it’s a diet modifier, and not so fine if it’s just part of the diet.

It’s this kind of splitting of hairs that drives people batty – and leads to the odd regulatory issue where it’s better (at least cheaper) for a company to attempt the “dietary supplement” route and change if forced to, than to start out following the rules in the first place. It is, in other words, a bandwagon-seeking food manufacturer’s version of the choice to ask permission or to say sorry.

Much like the toddler who has figured out that if you say you’re sorry rather than ask permission, you at least get to do what you want, these companies know that it is both cheaper and more profitable to sell your food as a dietary supplement and hope to fly under the radar than it is to play by the rules in the first place.

It’s a broken system, and one that can cause harm to the people who don’t realize how unsafe what they’re taking could be – the lack of regulation in the dietary and herbal supplements market is extremely concerning. The solution here is simple: make it much, much more costly to ask forgiveness after action, and reward those who ask for permission first.

quick thoughts on health care reform from an admitted baby eater*

It’s not too surprising that I occasionally (okay, frequently) am asked my opinion about the health care push, what I think, and so forth. So, in an effort to cover all bases at once, and cut down a bit on repeating myself til I’m blue in the face:

Is this an ideal health care reform bill? No, of course not. Anyone who thought we were going to wake up and be Just Like Canada or England after a single bill was, and I say this with all kindness, delusional. There were and are intense hurdles being faced by lawmakers – and not just other lawmakers. Opposing interest groups ran out the door, and not even people most eager for health reform, like the American Medical Association, were behind the latest bill until very late in the week.

One of the good and bad things about America is the competing interests and lobbying groups and financial interests and even organized voters who can threaten their representatives with a lack of re-election for not representing their interests. With all due respect to my friends on the West Coast, this issue becomes a lot more crystal clear on the East Coast; while there are still large blocks of red and blue on this coast, there are also even larger blocks of purple, where a representative has to face the fact that they are elected into office to represent disparate and widely varied views.

But anyhow, political rant for another day. Does the fact that the health care reform bill is not ideal mean it shouldn’t happen, or that Obama/the Democrats/whomever you want to place here failed? No, it’s a step forward. These steps are important, because they are very, very hard to undue. As my friend Russ pointed out, the 1994 Clinton initiative was considered a failure by people on both sides of the isle – and yet, 16 years later, no one talks of removing SCHIP or HIPAA, because constituents have become fond of them, and familiar with them.

This is how health care reform must work, as well.

And there are other things – other bills, policies, and efforts – that a lot of people seem to be ignoring in favour of moaning over how this current bill isn’t perfect, for whatever reason you support. We’re not going to get anything close to perfect until the FDA takes back control of drug policy from Pharma – something that is being worked on. We’re not going to get close to perfect until we give our infectious disease folks over at the CDC and USDA and even FDA more power to regulate food, to track infections, to be able to order rather than suggest recalls. We need malpractice premium reforms, something that is being fought for by people on both sides of the political divide, against Very Large insurance interests.

Is it perfect? No. Does this mean Obama failed you, individually? No. Does it mean there is still more work to do, work that includes educating those who, for a variety of reasons, are terrified by the results? Yes.

Does this make me an apologist? No, it makes me a realist. Medicine is full of compromise – I learned this up close and personal in the first ethics case I sat in on, in determining the course of my own treatments, and watching my mother navigate hers. There’s a reason most of us who are involved in the medical sciences, to any degree, are pragmatists. We have to be. Idealism is nice enough, but in the end, it doesn’t get forms signed or allow for care to happen.

*No, I don’t eat babies. In case that needs to be clarified. I am, however, actively pro-choice, and have been dipping my toe in bioethics for a while now. That has led to me being labeled some really interesting things in the past. I figure, I might as well embrace the funnier ones.