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.

I’ll Always Remember the 5th of November

Five years and a few hours ago, my mind filled in the blanks. It was around 6am; my father had guided me – by force and cajoling – to bed a few hours earlier, and then stood there to make sure I took the strong sedative he poured into my hands. I needed to sleep, he argued. She – we all – needed me to calm down. Worn out, I acquiesced and slipped into a hallucinatory blue twilight filled with the suns and stars decorating my sister’s bedroom.

Awareness is an odd thing. Although I was upstairs, away from the sick room, it’s clear that my brain registered some change. Maybe I heard the small beeps from a machine change; maybe just the right pause of my sister’s footsteps alerted me; maybe I heard the cat rouse herself from slumber at the foot of the hospital bed in order to act out. It’s hard to say what changed, but something did, and in the hazy twilight of that sedated sleep, I heard my name. I felt a hand across my forehead. I felt the gentle flutter of lips that followed that hand.

Groggy, I opened my eyes and I tried brushing my sister, who was being uncharacteristically affectionate and thus weird, away.

Only my sister wasn’t there.

No one was there.

A moment later my sister did appear in the doorway to the bedroom, looking drawn and wan. She gave me a quizzical look.

“Were you just in here?” I asked her.

“No,” she said in a tone I’d never heard before. She didn’t have to say it, then – I knew – but she did, anyhow: “She’s gone.

Patients, Academics, and the Conflict of “Risk of Harm”

On a recent Thursday, I had one of those odd convergence moments where my work life converged with my academic life: I attended a webinar on Protecting Patients from Harm: Ethical, Legal & Policy Responses to Domestic and International Marketing of Clinically Unproven Stem Cell Interventions. As usual with these sorts of talks, the really interesting stuff comes up in the audience question-and-answer period.3 One of the questions that was asked and not really answered to my satisfaction was the question of harm. In particular, the question is what’s the harm in allowing someone who is ill – either terminally or at least permanently – to participate in these unregulated injections of stem cells?

There are a lot of good answers to this if you’re a clinician or researcher or ethicist. But the answer to risk of harm is an abstract concept that can be difficult to translate to the personal when you-as-person already feels harmed, be it from a chronic or terminal condition. Respect for the body, justice, consent – these have already been taken from you by the illness that you’re locked in a struggle with; chasing treatment, even (if not especially) an unregulated and unproven one, is in many ways an attempt to re-establish autonomy and control.

The more nebulous concepts of harm – the ones that are in some ways more systemically important to medical and research professionals – are abstract and lose meaning in the face of the personal, which is why ultimately, trying to even engage the idea of unregulated research on the grounds of risk of harm is ineffective: it’s impersonal. Of course, the impersonal is often desirable in academic discussions; when talking to peers, it’s a matter of kicking the tires of ideas, of talking about evidence and replicable information. Papers that are written, whether formally or in slightly more informal settings, are generally addressing people with similar specialized language and background.

This might have been fine even a decade ago, but the Internet is a great equalizer, and what was once the purview of those with institutional credentials and academic backgrounds is now available for anyone with interest. And, I can tell you from first-hand experience, when you or a loved one is terminally ill2 and facing a long, painful decline, you get interested real fast.

When Mom was dying of cancer, there was a “novel spa therapy” making the rounds of daytime talk shows; I’ve joked since about it being peach pit therapy, but that’s largely because of all the things I do have lodged in my brain from the 11 months from her diagnosis to death, I apparently didn’t have room to remember this particular “therapy.” What I do remember is that it was very popular, advertised as holistic and natural, and being offered at a spa facility in Mexico, with the explanation being that American regulators had banned it because it was a simple cure that would undercut pharma profits.

I also remember the desperate willingness of extended family and friends to want to believe in this or any other alterna-treatment option for my mother’s cancer. The first few months of illness had us bombarded with “helpful” information on all of these novel therapies, including the Mexican peach pity therapy, along with explanations of how evil the FDA is, how cruel doctors are, can you believe those people who would deny us life-saving medications for Mom. It was an interesting window in to what people will say, given that at the time my sister was working on getting in to medical school and I was in graduate school for bioethics. In other words, we were a tag-team of evil in the eyes of folks who wanted desperately to believe that peach pit therapy would cure Mom.

And it’s rough, it’s more than rough, because at 3am, when you’re running your hand over the soft stubble of silver hair growing back after the latest round of chemo, as you gently swab your mother’s lips and tongue with a wet sponge because she can no longer swallow, you want that peach pit therapy. You want any therapy. If someone had walked in to the room that was hissing with oxygen, machines beeping, pumping morphine in to her body, and promised me that if I just gave him $15,000, $30,000, the moon, he would give me a simple and easy and non-toxic cure that would keep her with me, with us, for a natural lifespan, of course I would have leapt at it. I would have robbed a bank; I would have climbed the sky; I would have done anything. Who wouldn’t? Who doesn’t want that easy fix, regardless of cost, because it’s your mother, your father, your child, you.

The Internet is the great equalizer of access to knowledge; it’s true. And when you-the-patient, you-the-caregiver, are reading scientific studies, it’s relatively easy3 to at least figure out what the abstract is saying: Avastin is promising for some lung cancers, but not so great for breast cancer. You can try to piece together risk, efficacy, application. You can — and many people do — talk to your physician about what you’ve read and what it means.

Unfortunately, most people don’t have a pet philosopher in their back pocket, or a bioethicist on call to explain what that obscure paper on harm principles means, or how it applies to unregulated stem cell treatment, or even the historical issues surrounding the concept of harm, experimental treatment and illness. So while the Internet certainly equalizes access to knowledge and closes the gap for the motivated patient or caregiver in relation to science articles, is actually creates a wider gap between this group of people and those in the humanities working with concepts of patient advocacy, harm, and protection.

The academics are talking to their peers, discussing ideas that have deep history, attempting to do meaningful work, trying to protect the vulnerable from being preyed upon by unethical and unscrupulous people, and perhaps most importantly, trying to prevent needless deaths. Is this paternalistic, or infantilizing the patient? I hesitate to go that far, because I would like to think that any moral person would, on seeing an oncoming car aimed towards another person, do their best to yank that other person out of the way — not out of paternalism, but simply out of reaction and instinct.

But that doesn’t mean that these papers and discussions aren’t difficult for the patient or caregiver, because it’s not the same as a scientific results paper. There isn’t an easy analysis of works or doesn’t, there aren’t results on charts and graphs, and there isn’t anything to discuss with your physician. Instead, it’s really easy to be left feeling like a nameless statistic rather than a person with an illness with a family and a story and a desire to live — vague references to philosophical theories or shorthanded comments that lead to a long string of clinical abuses by researchers, or just impenetrable talk about varying principles; all things that have little to no meaning without years of academia and context. The very things the Internet has not yet figured out how to equalize. So instead, you’re left feeling frustrated and back to helpless — that same state the illness has created — only this time it’s created by the people who seem to be doing everything possible in their power to remove your access to hope. How could you not be angry?

I honestly don’t have an answer to this gulf between those in academia who are doing their best to limit access to unregulated medical therapies, stem cells or otherwise, out of good intent,4 and the patients who feel like this has reduced them to nameless numbers without a voice. I do think that the onus to bridge that gap is on those in academia; to write a bit more accessibly, in less prestigious forums that are read by more patients and caregivers, and to leave behind some of that dispassionate academic voice in exchange for more emotive and compassionate language.

Novel Therapies Should Be Tortoises, Not Hares

I knew there were going to be a lot of hard things about losing Mom to cancer: holidays and birthdays and events like my sister graduating from medical school. This was almost a given, in those panicked moments after hearing the diagnosis and knowing what it meant, that it was a matter of when and not if. I didn’t realize quite how pervasive it was going to be, though, or that it would create such a strange position to be in every time I read about a new treatment for lung cancer, or I read through for work and see something being tested, or hear about new drug approvals. Each time, I have that brief flash: this existed five years ago. This may have saved Mom.

Early on in treatment, a couple of colleagues pulled me aside and I got one of those lectures. The one that offered whatever help was possible, but – because they were bioethicists – the one that said we should go with established treatment protocols and avoid the clinical trials, especially if it would mean moving Mom out of her home and to somewhere strange. Comfort and palliation were a huge focus, and it’s something I still appreciate, because it did give me a bit of an external rock to lean on when we started getting the “helpful” suggestions. You know, the ones that ranged from legit clinical trials in another state to peach pit essence therapy in Mexico.

And when your mother is dying, you want hope. You will claw desperately for hope, even if it’s in a coffee bean or weed.

So I understand. I understand better than a lot of people when there are complaints about how slowly regulatory agencies move, and that requirements of animal testing slows things down. And I have the education to know that just because a drug works in one animal model doesn’t mean it will be successful in humans. But those regulations are also put in place to protect people, and hearing that researchers in Canada are complaining about stem cell trial regulations does not generate a patient response. In fact, I think my exact words were “you would assume someone who had made it through medical school and become a trial PI would have more patience than a toddler.”

But what really stood out to me was this:

It probably would have delayed the field by another 10 years,said the neurosurgeon. When you think about a condition as serious and life-threatening and damaging as spinal cord injury, is that a reasonable bar, or is that setting the bar at a level that is not appropriate?

Well, personally? I want that bar set high. I want to know that every possible precaution has been taken to make sure that what is being given to the public is safe. Yes, my mother died in part because the bar is set so high on testing novel drug therapies, and she didn’t have access to drugs that are certainly out there and potentially could have saved her life. But I also know that she died from cancer, and not from greed.

And I think that appeal to emotion made by that neurosurgeon is really what irritates me.5 Because that’s getting dangerously close to what the fraud-y stem cell clinics do, and the alternatural therapies – they offer hope and appeal to that emotional “let us skip all the things necessary to prove this is both safe and effective, and instead just jump right to miracles!” When someone advocates stepping outside an established scientific process, it needs to be for a reason that is stronger than “I don’t want to wait.”