Category: Uncategorized

The Quarantining of Normal

After a week of gloomy weather, it had been gloriously sunny all weekend in Southern California. But as evening approached on Sunday, March 22, it was raining heavily again. It was the kind of weather that makes you shelter in place. Pandemic weather.

Seemed a poetic end to a weekend that was a big, stormy test for a lot of us.

It’s not that it was the first weekend that was impacted by coronavirus. Everyone with an ounce of awareness (and zero tolerance for bullshit conspiracy theories) has known for a while that things were getting serious. Even those who were inclined at first to nod along hopefully at the platitudes coming from our leaders, had come to grips with the magnitude and gravity of a crisis that could no longer be glossed over with worthless—and worse, dangerous—assurances that everything wasn’t so bad. New cases of infection were being confirmed daily all over the world, by the thousands. Media coverage of the virus was now overshadowing Joe and Bernie. And the term “social distancing” burst onto the scene like the fucking Kool-Aid man and took up residence at the top of our cultural lexicon in an inescapable way.

All of this, and it wasn’t even St. Paddy’s Day yet.

But, going into this last weekend, I think a lot of us* felt like it was the first weekend we’d be living through since shit got really real with the coronavirus pandemic.

I’m right, right? In the last week or so, hasn’t it felt like a year’s worth of drastic headlines has been packed into every single day? Pro sports leagues suspended their seasons. State and local governments began shutting down life as we know it. Schools closed. Then restaurants. Your favorite bar last-called for the last time until who knows when. Several states postponed their primaries, and campaigning all but ceased with less than 8 months until what is probably the most important presidential election of our lifetimes (if it wasn’t before, it’s certainly shaping up to be now). Millions of people whose livelihoods depend on physical interaction with other people were suddenly boiled down to “essential” or “non-essential.” And for those of us who are fortunate enough to still have jobs at all (non-essential though many of them are, evidently), the majority are now working from home. I mean, I’ve been working from home for 10 years, so for me, the work isn’t the weird part; it’s that home workplaces are suddenly the norm.

And amidst all these changes blazing our way at warp speed last Monday through Friday, our attention was incredibly steadfast somehow. The world’s infectious disease experts, who have been trying to warn us for, oh, EVER, were now suddenly being listened to. (And by the way, even though those scientists and doctors would have every right to spew a hearty “We told you so, you shortsighted nut sacks!” at the world, I haven’t heard a single breath of that kind of smug righteousness from them, because smug righteousness takes time, and there’s no fucking time.) Epidemiologists, mathematical modelers, and vaccine researchers are working their fingers to the bone trying to get a handle on this thing. I bet they wish they didn’t have to keep looking up from their work every 30 seconds to warn us AGAIN about the seriousness of it all, and beg us to please, for the love of whatever you hold dear, DO YOUR PART.

And most of us are getting it, thank God. Stay inside. Don’t go out unless you absolutely have to. Wash your ever-loving hands. Over the last week, most of us fully joined the ranks of the Flatten the Curve army. Widespread changes and limitations, unimaginable four months ago, are now not only reasonable and doable, they’re CRITICAL, even if we still disagree on some of the fine points (even with lingering disagreements, can we all at least concur without exception that these buffoons are unquantifiably horrible?).

For me, last week was crazy busy, work-wise. The need to focus on work was good, and I imagine it was the same for a lot of you (given also that “work” could be substituted with your suddenly home-schooled kids, or your spouse-turned-office mate, or all of the above). Monday through Friday was about adjusting to a new normal, but one that, blessedly, was still rooted strongly in routine. Get up, make coffee, do the thing(s) for six or eight hours without ever leaving the house, repeat. Routine meant familiarity, even in a new setting, and even though the days were long and the pace was non-stop, when it was quittin’ time, we barely cared or even noticed that there would be no baseball practice to get to, or happy hour with friends to attend, or March Madness game to tune into…we were tired and needed rest, because tomorrow was going to be the same.

Until Friday.

The routine of the work/school week was paused, and the schedule was wide open. Consequently, a new uncertainty emerged, exhilarating and scary: what would we all do with so much time when out-of-home options were essentially nil?

For so, so many of us the answer was a bizarre dichotomy: on one side, there was simplistic, analog leisure (Family bike rides! Jigsaw puzzles! Oh and look at all those books I forgot I owned!), and on the other, complete immersion in technology (Netflix and quarantine! Tik-Tok makes performers out of everyone and their grandmas! And raise your hand if you lost your Zoom virginity this weekend!).

And listen, I fully bought into #quarantinelife too, y’all. Virtual happy hours and revival of long-neglected hobbies were the weekend m.o. at my house.  I even convinced my 16 and 21 year old daughters that we should learn the choreography to “We’re All in This Together” from High School Musical, because “We’re All in This Together” has pretty much become the motto for Planet Earth, and hey, it was something we could do without leaving the house. We were all acting like it was suddenly January 1 again, and the resolutions were out in force. There was no limit to the possibilities, as long as they could be done without going within six feet of anyone we don’t live with.  I even began vlogging my weekend play-by-play on my Instagram/Facebook stories, not because I thought it would suddenly be interesting to anyone, but because we had all agreed to this new set of acceptable social behaviors and I was all about it.

Going into the weekend, my battery was fully juiced. So I went in hot, like so many others did. I was going to DO stuff, dammit—inspiring, Instagram-worthy stuff. Look at me, making lemonade out of lemons! Help people? Hell yeah (no idea how, given that I’m pretty much in total isolation, but I’d figure something out)! Can’t go OUT and do what you’re used to? Then stay IN and do what you never would have even considered if you weren’t inescapably compelled to. That will show this virus who’s boss!

The problem though, was that that kind of enthusiasm was unsustainable. I said it before: this last weekend was going to be a test. It was going to challenge me to adapt to big changes, accept my lack of control over about 97% of what’s happening, and come out of it with my sanity, patience, and optimism intact. But by rainy Sunday night, the battery had already gotten shockingly low. It was a mere 48 hours since that first virtual happy hour on Friday—all smiles and “We got this!” and mutual promises that we’d do it again, soon and often—and here I was, exhausted and feeling emotionally defeated. I had come in TOO hot, and I bonked with lots of race left to go.

Turns out, I wasn’t alone. By Sunday night, the same friends who had been tagging each other in quarantine memes and posting pictures of their bountiful stay-at-home wins all week, were letting the cracks show, talking about sadness and insecurity and confessing, “I don’t know how long I can keep doing this.” It was striking. We were all realizing that a single week  of collective “We don’t know what we’re doing, but here we go, and we’re gonna crush it, and yay!” thinking—and successfully not murdering each other—is only the start, and in fact, a return to normalcy is nowhere in sight.

And all those dark and terrifying feelings that have been simmering under the surface all along, were bubbling up…

I miss my people. I long for boring, normal shit like pub trivia and hikes with friends and pumping gas without being in a state of borderline panic the whole time. I really might lose my job. I might lose my healthcare. I’m worried about how much food and toilet paper I have, but I’m also guilty about how much food and toilet paper I have. I’m annoyed about losing so much personal freedom, but also guilty about being annoyed, considering how little I appreciated that freedom before it was restricted. I’m scared… and I’m not guilty about that, but I am heartsick that my kids are scared too, and how can I lessen their fear when I can barely get a handle on my own? Will any of us come out of this unharmed? Avoiding viral infection would only be one win, and maybe not even the biggest one. How is my mental and emotional core ever going to recover from this?

But I can’t let that take over. Gotta keep swimming through these murky waters, as one little fish once taught me. And ya know, uncertainty is more bearable when it’s shared with others, and when it comes down to it, the rest of y’all are as clueless as me. I cope one day at a time, with deep breaths,  heavy pours,  crying to myself, laughing with others, and evidently, 1,700 words to express my cluelessness. Of course, the five words (and the snappy choreo) of our 2020 global motto does it more efficiently: We’re all in this together.

 

 

 

 

* I guess by “us” I’m talking mostly about middle class American families, because, as our old friend Ray Zalinsky would say, “That’s what I am, and that’s who I care about.” I mean, I care about more than just middle class American families, but then the quote wouldn’t work… Anyway, I know that the range of experiences that people all over the world are facing right now is vast, and I make no claim to speak for everyone (or anyone, other than myself, really). (more…)

I have a date!

The last time I blogged, it was to share news of my thyroid cancer diagnosis, which happened in late May. If you didn’t see that post, then, um, sorry for the spoiler. That post is here, and it should bring you up to speed on the excitement of my summer so far.

 

All caught up? Cool.

 

So now, this is the update many of you have been asking about. After weeks of insurance-related tomfuckery and scheduling bullshit (not bitter at all), I have finally locked in a date for my surgery: July 31.

I know you all must have follow-up questions bursting out of you like citizens of Hawkins on final approach to the Mind Flayer (if you don’t know what I’m talking about, get off your ass and catch up on Stranger Things already). Who wouldn’t?? Here’s what else I can tell you:

  • I’m still not 100% sure what the extent of the surgery will be.
    • At minimum, half of my thyroid gland will be removed (fingers crossed that it’s the half with the tumor on it).
    • At maximum, the whole thyroid and some number of lymph nodes in my neck hole will be 86ed. Fun fact: surgical removal of lymph nodes in the neck is also known as neck dissection. Neck. Dissection. Which doesn’t make me feel nervous at all.
    • Or, it could be something in between. I’ll know more after my pre-op appointment with Dr. Rafii on July 23. Should I start a pool to see what it ends up being?
  • I will probably have to stay overnight in the hospital. Which means at some point, someone will probably have to watch me pee. TBD on whether or not I get to keep the gown.
  • Also TBD is whether or not I’ll have to do radioactive iodine treatment at some point after surgery. So keep the Geiger counters on standby, just in case…
  • Yes, I am aware that my surgery is taking place on Harry Potter‘s birthday. And yes, I will absolutely be bringing this up to Dr. Rafii at the pre-op, and discussing my request for a lightning bolt incision to be used.
  • And yes, I will definitely be having a “Say Goodbye(roid) to My Thyroid” party before I go under the knife. There will be food. There will be drinks. There will be a pinata. Other crazy fun stuff is guaranteed. And because I have a roughly 5% chance of suffering permanent damage to my vocal cords during surgery, we’re going to karaoke like the world is about to end. If you’re reading this, you’re invited.

So that’s the scoop for now. Thank you to everyone who has reached out with texts, emails, cards, hugs, and just awesome support in general. I am so grateful for all of you. I will continue to post when post-worthy things happen.

 

~EDB

So, there’s bad news and good news.

Which do you want first?

Just kidding, you don’t get a vote. You get the bad news first.

As if the universe hasn’t kicked me in the balls enough these past few years, I’ve just found out that I have thyroid cancer.

Fuck.

I had an MRI back in March for my MS (as I do every 6 months or so), and upon examining the images of my neck, an attentive radiologist spotted a nodule on my thyroid gland. It was totally by chance that it was discovered. I was sent for an ultrasound, which is pretty routine when strange lumps appear in/on body parts, and based on that look-see, was sent back for a fine needle aspiration (FNA) biopsy, a procedure that involved a trained medical professional stabbing me in the throat four times with a needle that she insisted was “tiny” but, I submit, WAS STILL A NEEDLE STABBING ME IN THE THROAT. It was…unpleasant. Basically the opposite of this:

The FNA was on May 13, and after that, I honestly kind of stopped paying attention to whatever was going on in my gullet. But then, on May 29, I got a phone call from my doctor, which is never a good thing. As one friend rightly observed, when there’s nothing wrong, they send your results in the mail; when it’s bad news, they call you. The doctor told me that the results of the biopsy showed that the nodule was malignant.

So, that’s the bad news.

Fortunately though, we can quickly take a U-turn and start heading back toward Goodnewsville right away. It turns out that, if you had to get cancer, thyroid cancer is a pretty good one to get. Which is such a weird thing to say, but here we are.

The type of cancer that has taken up residence in my neck hole is called papillary thyroid carcinoma, and of the four main types of thyroid cancer, PTC is the most common (about 80% incidence), is almost always asymptomatic (true here…I wouldn’t have known anything was wrong if it hadn’t shown up on the MRI), is highly treatable, and has a 98% cure rate when caught early (as mine was) and treated appropriately (as mine will soon be). Put simply, it’s the basic bitch of thyroid cancers.

Let’s briefly hit pause for a little anatomy lesson about your thyroid, because I’ve learned a bunch about it and you should too. The thyroid is a butterfly-shaped gland located in the front of your neck, just under the skin’s surface, warmly embracing your windpipe. You have one thyroid gland, though you’ll sometimes hear the terms “right thyroid” and “left thyroid,” which, understandably, may lead some to think that there are two of them. There aren’t, just two distinct sides (lobes); those are the butterfly’s wings. The thyroid gland has one job: to produce thyroid hormone. Thyroid hormone traipses all over your body, regulating your metabolism (i.e., the body process that converts oxygen and food into energy, or, if you’re over the age of 30, that thing that you wish still burned as hot as it did in your 20s). So, it’s kind of a key player. If you want to learn more about the thyroid—and who the hell wouldn’t?—this site breaks things down very well.

Okay, back to me. Because that’s why you’re here, really. What’s next for ol’ EDB?

The treatment for papillary thyroid carcinoma is old school: we’re just gonna cut that fucker out. No chemo needed, just surgery of the -ectomy variety.

Enter: Dr. Rafii, the ENT surgeon to whom I was referred. Michael and I were able to meet him just a couple of days after the diagnosis, and he seems great (though I suppose I don’t know how I’d tell if he wasn’t…). He went to medical schools I’ve heard of, he has done this type of surgery many, many times, he patiently answered our myriad questions, and he laughed at my dumb jokes about not wanting to put my thriving karaoke life in jeopardy with risky procedures taking place near my vocal cords. So in summary: I feel a-okay about letting him slice open my throat sometime within the next month or two.

According to Dr. Rafii, if a tumor is 1.5 cm or smaller, they’ll usually only remove the part of the thyroid gland with the nodule on it. This is called a lobectomy, or a hemi-thyroidectomy. Tumors that are 4+ cm almost always necessitate a full thyroidectomy. Anything in between is approached case by case.

My tumor is 3.4 cm (~1.5 inches), perched on the right side of my thyroid gland. Michael and I have named it Papillary “Pappy” Van Stinkle. And before you say, “Erin, what are you doing naming your tumor? Once you name it, you start getting attached to it!”, rest assured that this is just my silly coping mechanism and I will have no problem Harry and the Hendersons-ing the little asshole when the time comes.

 

So yeah, for me, Dr. Rafii is leaning toward removing the whole thyroid, since Pappy is approaching the 4 cm size, and on the ultrasound, its shape/borders appeared to be a little unruly. In other words, it’s not a nice, neat, well encapsulated lil’ tumor, and its sloppy composition means it’s possibly more likely to have allowed some nasty cancerous cells to escape into the nearby tissue.

So that’s probably what we’ll do. A full thyroidectomy will mean an overnight hospital stay, but life should return to normal pretty quickly after that. Plus, I’ll have a badass neck scar, which should earn me some serious cred on the mean streets of Redondo Beach. So I got that going for me, which is nice.

If, after the surgery, there is evidence of, or concern that, any cancerous cells might have been left behind, or might have escaped and gone all Richard Kimble elsewhere in my body, I’ll also need to do a round of radioactive iodine (RAI) treatment, which is bananas crazy and fascinating. Here’s the scoop and I’m gonna tell you: evidently, thyroid cells are the only cells in the body that will absorb the element iodine. We all take in harmless amounts of harmless iodine from various foods and environmental exposure without even noticing. But, if your thyroid disrespects you, its unique relationship with iodine can be used against it.

You wanna kill some thyroid cells, here’s what you do: consume a radioactive form of iodine which, when absorbed by the offending thyroid cells (well, any thyroid cells, really), will basically nuke them out of existence. Treating cancer with radiation isn’t that unusual, but in the case of RAI, when you ingest it, YOU become radioactive for a few days. Like, mediocre Imagine Dragons song radioactive. Like, doctor has to check you with a Geiger counter radioactive. Like, don’t go within 6 feet of small children or pregnant women radioactive. Like, Chernobyl but on a much smaller scale radioactive. THAT radioactive. But it’s, like, healthy for you. If you need to kill off thyroid cells. Which I might have to do.

Oh yeah. I also still have MS, and she’s been a little bitch this year too. But I won’t get into that now.

Soooooo….that’s what’s going on with me. How are you?

 

 

(I started this blog after my MS diagnosis 3 years ago as an easy and efficient way to update people about the update-worthy goings-on in my life. This qualifies, I think. For whoever is interested, I’ll keep you posted here. Much love ~EDB)