Life as an Extreme Sport

I Had Two Ultrasounds This Morning

December 14, 2012 Kelly Duct Tape and Prayers, life and living

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.

Novel Therapies Should Be Tortoises, Not Hares

September 20, 2012 Kelly ...and everything else, Bioethics, Duct Tape and Prayers, Tilting at Windmills

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 clinicaltrials.gov 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.1Shocking, I’m irritated, I know. 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.”

Tuna Tuesday*: “Zeus, You’re Being Such a Butthead!”

June 22, 2011 Kelly Duct Tape and Prayers, life and living, wisdom and folly

One of the worst things you could tell me, when I was a teenager, was that we all grow up to become our parents. Actually, becoming my father wasn’t that bad an idea – my dad is funny, snarky, has a fantastically contagious laugh, and he made me the geek I am today.

But oh, becoming Mom? Full body shivers and complete denial. I would never become my mother. Ever. Over my dead body.

Thankfully, it didn’t take her dead body for me to realize that I am my mother’s child, as much as I am my father’s child. It was a slow revelation that crept up on my in my early 20s, as I made peace with my parents and the hormones and crankiness of the teen years flushed out of my system. Of course, being difficult, I noticed the negative traits first. Anyone who has ever noticed that I can hold a grudge like it’s an Olympic sport did not meet my mother – she made me look like a rank amateur when it comes to grudges. (In fact, her entire side of the family really elevates it to an art form.) But slowly, I noticed more things: singing and dancing while cooking, loving to cook, being an adventurous eater, always sneaking in reading when possible, loving fields of flowers and the quiet moments of beauty that sneak up on us.

But as anyone can tell you, knowing you’re like your parents is entirely different than sounding like a parent.

Yesterday, I was taking some photos for a project when Zeus decided he needed to see what I was doing. He really needed to see what I was doing. And since I was using a repeating shutter in order to minimize blur, I got cat. I got a lot of cat.

And without even thinking of it, I heard myself saying “Zeus, you’re being such a butthead!” Zeus just tilted his head the other way, trying to figure out what the shiny thing in my hand was and if he could eat it, and I looked back at him, caught between horror and amusement: I sounded just like my mother when she was exasperated with my brother. I was never the recipient of “being a butthead” commentary, but oh, my brother and my uncles. The chorus of my childhood is filled with “stop being a butthead”, inevitably directed at one of the male members of our household.

It’s a phrase I haven’t heard in years, and I’m not ashamed to admit that I puzzled Zeus further by getting teary and then sweeping him up in a hug. The small things that we never think of so often seem to be the things that become woven into our being; I would have never selected that phrase as an intentional one to add to my repertoire of creatively expressing exasperation, but knowing it’s there gives me another thread to the woman I would have once been horrified to be compared to, and am now merely grateful that such comparison is possible.

* What do you mean, it’s Wednesday? The rule of the land is this: it becomes the next day when I have slept. Going on 40 hours awake, it’s still Tuesday for me. A very, very long Tuesday…

these things go through your head

March 7, 2010 Kelly a-musing, blog as therapy, life and living

When I was little, my mother would buy the peanut butter that had separated in the jar. When we got home from the store, there was always the ritual of dumping the peanut butter into a bowl, stirring everything up, and then placing it back into the jar.

I never had to do this; Mom always did. It was sticky and messy and lunch for all of us, so leaving it in the hands of an impatient child probably would have been a bad idea.

Even though I never had to do this, I always hated it. It was so pointless, I though. Why spend the time and the mess and the energy when you could just spend a little more for the stuff that was already mixed? That was faster! It was cleaner! Therefore, it must be better.

Mom would just shrug and say that this was the way her mother did it, and this was the way she did it, and maybe some day I would understand. I was a child, so of course I knew that I would never understand, and fastercleaner would always be better.

It’s nearly 4am, and these are the things that go through your head when you’re standing in a bathrobe in the kitchen, mixing a new jar of peanut butter.

Tag: Mom

I Had Two Ultrasounds This Morning

Novel Therapies Should Be Tortoises, Not Hares

Tuna Tuesday*: “Zeus, You’re Being Such a Butthead!”

these things go through your head

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Seek And Find. Maybe.

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