It’s your birthday! We’re gonna party like it’s your birthday! Well, in our creaky and cautious way we are. Too much alcohol in the middle of the week never does us much good. But we’ll have some later, because of course we will.
I keep tallying up in my head all the ways I feel I’ve failed you (just today: coconut cake I bought for you had undisclosed cream cheese frosting – blech). But I know you don’t think in those terms, so I’m trying to stop.
You’re my rock (and you rawk). Solid, broad-shouldered, strong and unwavering. Without you, I couldn’t have had the response to my illness that I did. Without you leaning all the way in, my return to work would have been disastrous. You enable me to be strong by letting me not worry about the rest. I don’t think any prior situation in your life prepared you to face what we’ve gone through, which means that your response to it is simply part and parcel of who you are. A problem solver. A one-man pit crew. A beacon in a storm. Damn, I am a lucky woman.
For the coming year, I wish you more music (and people to play it with), more basketball, and more love. And 100% less cancer caregiving. Because enough already.
I’m experiencing two firsts today, both probably totally unremarkable to 95% of you.
1. I’m having a sick day. What this means is, I am supposed to be at my place of paid employment, but woke up feeling lousy, and took a sick day. It has been a while since my health needed to be reported in any official capacity related to employment. I emailed my boss. She wrote back, “Feel better!” So unlike my two former bosses, who would have maybe paused for a second before asking for more cookies, more tv time, or (most exhaustingly) more of me. The laundry also doesn’t take emails when you’re sick, but I quite presciently did it all yesterday, when I was teetering on the precipice of unwell.
2. I am having a run-of-the-mill sick day. It’s not related to cancer or to a full-body immune response, it does not require steroids or any sort of intravenous infusion, and – best of all – does not involve any kind of intestinal distress. I did go to the doctor today, to get tested for strep (negative), and found, as usual, that Dr P’s office has kept my primary doctor in the dark about my condition, (even though I had asked them to send updates – guess they are too busy saving lives to send faxes?). So, I had to unfold last fall’s tale of woe in person, and watch as the doctor turned it into computer shorthand.
And then: I came home. No stop at the pharmacy required. I made a pot of Throat Coat tea, the taste of which sickened me when I first tried it, but which now has a place in my heart, because it really seems to work. I started a pot of chicken soup while I drank the tea. And I even had time to place a phone call to the makers of the graham crackers we had in the house (a box bought, I think, during my former crisis), which tasted rancid this morning. The person on the phone took this very seriously, and is FedEx-ing me two fresh boxes.
I’ve napped a bit, but not as much as I thought I would. Turns out I have lost the ability to sleep all day. I wonder if I’ll ever get that back.
For now, I’m staying in bed, watching a movie which is so bad as to be unmentionable, and listening to the kids through the door, with their lovely after school sitter. And once again, despite the (minor) misfortune of being sick, I feel lucky and grateful. A real sick day, just for me!
I’ve been doing fine, really. There’s that moment right after my alarm rings at 6:30 a.m. that I wonder what the hell I’m doing and WHY. Then the fog clears and I remember things, monosyllables at first: WORK. GOOD. CASH. TRIPS. Not exactly what you’d put in the “Objectives” section on a resumé, I’ll grant you that.
But I’ve been missing the kids and my weekday routines. And I’ve been missing my extended family. Passover is coming, but it’s not that close.
Which is why, even though I wasn’t home to greet her when she arrived (for the first time in perhaps ever), I am so thrilled that my mom is here. And I’m not even sick this time. She doesn’t have to tend to anyone sick, in fact (though I’ll be happy to outsource to her the giving of antibiotics to Young A, who is recovering from strep and needs them for another week). I wished I could have been there to see the kids bouncing around because she’d arrived.
She also brought me a replica of a curative amulet, in Hebrew but originating in 18th or 19th century Persia, which I will be wearing often between now and the indefinite time in the future when I am cleared of all charges. It is also, objectively, a beautiful object.
Sorry to anyone who’s been missing me around here. The new working lifestyle is still settling in. I don’t spend a lot of time checking in with my emotional or mental state, which is probably for the best. After a solid month of addressing pent-up need for my presence at work, things have slowed down a good bit. This week is spring break and it will take every fiber of concentration for me not to waste the week. It is deserted here. I have half a mind to take up residence in one of the primo study carrels by the windows and spend the whole day daydreaming. I’ve never been very good at staring down an empty calendar and magically filling it in with worthwhile, fundamental, enriching activities. There’s some very important but very self-guided stuff I need to learn, so I have blocked out time on the calendar to do that this week. I don’t want to let myself down. I am spending 12 more minutes on this post and then shutting down social media until… until… well, for an hour anyway.
A month into my second coming as a salaried worker, I feel totally okay about it. The kids seem to be thriving, and we found an after school sitter who is just right – responsible and responsive, but not a parent replacement or an entertainer. These kids basically entertain themselves, especially now that Young A is reading up a storm. Young J has finally come around to math, now that multiplication is no longer an impenetrable fortress. And perhaps most important of all – we aren’t starving, nor are we subsisting on takeout. This wouldn’t be possible without J, who is my absolute equal in the kitchen (and way better at things like trussing a chicken than me). I try to compensate for my absence in the kitchen by making nice things when I can.
I’m a month away from my next scan. The days between today and the day I get results will not be any different, but I’ll be inhabiting them differently, either lost in a blur of distractions or lost in morose contemplation of how life proceeds for me these days – a lease that gets renewed in short installments. When I’ve had a good meal and some coffee (still decaf), I can luxuriate in some fantasy: They look at the scans and can’t find the tumors anywhere. Like they scanned the wrong person, maybe, until they find the calcification on my right lung that’s always been there and realize I utterly smote the tumors dead.
I’ve had to learn a lot about faith in order to not go crazy. And I’m not talking about religious faith, either. I’ve had to learn to have faith in my immune system, something I just have, and if I’m lucky it works and I don’t need to know another thing about it.
I don’t need to know another thing, except that when required and when encouraged to do so by pharmaceuticals… it can turn into a fucking ninja.
I’ve been meaning to post about this for a while, but didn’t quite know where to start. If you wait long enough, though, the Internet always serves up a jumping-off point. To wit: this article in defense of online friendships, which appeared in The (new, run by pod people) New Republic.
Long before getting cancer and starting this blog I led a vibrant virtual social life. (I met J on an online dating site, but then, that wasn’t much of a destination once we were in a committed relationship.) I want to say it began when I joined Weight Watchers and stumbled into a local support group on their discussion boards. I felt it wouldn’t be as weird to engage in lengthy conversations with strangers about my cravings for fattening foods if there was some chance I might get to meet them in person someday – which as I think about it now seems perhaps the exact opposite of why most people choose to engage with others online. (I did manage one meetup with the group, at a bar where, ironically, I met up a few years later with friends from another virtual realm. Despite what you might think, not everyone from the Weight Watchers group ordered a wine spritzer.)
At the same time, I took up running and found the discussion board on a running website helpful for coaching me through the grueling start of the “Couch to 5K” program. A pharmacist and avid lifelong runner in his 60s “adopted” a bunch of the newbies, including me, and we had a thread that went on for pages and pages. One participant from Indiana was trying to get in shape to try out for a SWAT team. Another, who owned an optometry shop in West Virginia, was starting up running to cope with empty nest syndrome. I loved that I had running in common with these people, who were not a thing like me in other ways.
And then… I got engaged to J. I was sore afraid of the Wedding Industrial Complex, so early on I found my way to the website Indiebride (no link, it’s gone with the wind). Here were my people! The ones who wanted their weddings to mean something to them and their guests, the ones who were irreverent when it didn’t matter, and serious when it did matter. The place where I learned I could purchase my (simple, elegant, 100% polyester) wedding gown from a bridal shop in Louisiana, saving me a pile of money, even though it was originally shipped there from New York! And most importantly, there were women (it was mostly women, maybe one random guy) who would not hesitate to cast a virtual “IFOD” (Indie fist of death) at whoever might have needed one – your fly-by-night florist, your wedding craft project gone awry, the almost universally dreaded MIL…
I won’t say that my involvement with this online community was not without its faults. There were women on there whose little fingers were craftier than my entire body was, and I may have been unduly influenced by that, to do crafty things I had no business doing – most glaringly, proclaiming we’d “do our own flowers,” which turned into a punishing, hours-long ordeal for almost everyone but me, since I’d had my manicure already and couldn’t join in the torturous “fun” of achieving my “simple” floral vision for the event. As a sort of penance, I was up until 3 a.m. the night before my wedding completing other crafty projects I truly had no business attempting. I posted a recap of our wedding and the few days before it that contained so much detail I probably wrote it in real time.
As time went on, and the glow of the wedding began to dim, I probably didn’t participate in discussions on Indiebride as much (though I probably popped back in to give advice or to read how others’ weddings had gone). And after a couple of years of wedded bliss, J and I were ready to begin the process of legacy-building. By which I mean, procreation. There were, by 2006, a lot of places to talk about TTC on the Web. I went back to Indiebride since I remembered a lot of people had started discussions there about it, and I found that many of my former interlocutors had decamped for a shiny new pasture, its name a clever echo of the geekier Usenet days of Internet community which I hadn’t frequented much. I’ll refer to it as the Dot.
So I joined up too. There was so much to learn! So many acronyms! And infertility talk was so commonplace, I began to worry that at 34, I’d waited too long and it wouldn’t work. When we failed to conceive after a single cycle, my mind ridiculously went to the darkest possible place. I had internalized content, abundantly available in the TTC discussions, without the slightest notion of context (my family fertility history, actual past attempts at getting preggo). What I did gain from these discussions was a better understanding of what it means to be infertile, and I hope it has made me a more sensitive person to issues surrounding it.
All through my pregnancy with Young J, the Dot was there, recording every kick and every craving and every ridiculous fear or anxiety I could come up with. I posted my birth story, replete with the kind of gritty, gory details you’d never want on Facebook. There were a few meetups with local moms and their babies from the same cohort as Young J. I was dimly aware of a parallel snark site set up, where infiltrators of the Dot would harass anonymous people anonymously, but I didn’t spend a lot of time there, and certainly didn’t think it was worth my while to post anything snarky. I felt like I had clear boundaries about how complex I wanted my virtual life to be, and going and talking behind someone’s back virtually seemed like a recipe for disaster.
I continued to participate on the boards quite avidly through Young J’s early childhood, my pregnancy with Young A and his birth. I started feeling a little more distant from the Dot, maybe due to being busier with two kids, maybe for other reasons. When I posted one day seeking support for a tough parenting situation, there was a vocal and very unpleasant backlash to my post that made me feel it wasn’t the safe space I had imagined it to be. I think there was some snarky talk by trolls (I didn’t investigate). So, I pulled back.
Luckily, by then I had managed to connect to some of the women from the Dot in a more “real” virtual context, Facebook. I had also joined (and then quit, and recently rejoined) another online community, a curated one with a convener, which comprises a lot of frightfully accomplished people from various contexts… and then people like me, who are there to cheer them on, and to aspire to such greatness.
When I got sick last fall, we had lots of generous and heartfelt offers of help – help with meals, playdates for the kids, etc. Our families helped. The community at the kids’ school was forthcoming with offers. We were so grateful. I was even grateful for (and amused by) all the offers of medical marijuana.
I never anticipated hearing from the women of the Dot, as an organized group. I heard from them, they offered support, and although I was having a hard time saying yes to most offers of help, I learned to say yes. They sent us delicious meals from our favorite restaurants. They checked in constantly, but never, ever often enough to be annoying. I got handwritten notes from some of them – even women I hadn’t interacted with on the Dot – sending me strength and prayers and well wishes. At one point I wanted to send written thank you notes and was informed of the number of people who were behind this effort – a whole lot.
Although I hadn’t been an active, contributing member of this virtual community for years, I am still, somehow, a part of it. And that virtual – but very real – community supported me and my family when we were most in need. That feeling is powerful, and in recalling this time and all of those who helped us, I will never forget the special support of my “friends from the computer.” I love you all.
I’ll close this out in the most Internet friend-ly way possible, with a vintage Muppet Show clip I love:
I spent about 40 minutes last night watching this. Because I am a… cancer nerd??? Because I kind of miss my doctor? I can’t claim to have understood even 50% of what she said, but I like her style and I did learn something fascinating, about Coley’s toxins and the origins of immunotherapy in his (misguided) work.
Also, since she wasn’t talking to patients, she did talk about some patients of hers who didn’t make it. The unvarnished view you don’t necessarily get unless you ask, and even then you probably wouldn’t hear much detail.
Anyhow, it increased my already great respect for her as a researcher. She has truly devoted her entire life to this cause. Thanks, Dr. P.
It’s the winter that refuses to end! There is a sort of mocking sun out now, and the temperature is just above freezing, giving us a slight illusion that things might go differently soon. There is ice that has been around so long I swear I can smell it. It smells like boiled cauliflower in places, and in others, unmentionable.
Still, you’d have to be an unrepentant curmudgeon to not believe things will get better soon. To that end I bought some new clothes last week, after a particularly bad fashion day at work where I looked and probably felt like a lumberjack. I’m not expected to dress super professionally but that day, I think I went too far in the other direction.
I’d been having a moratorium on clothes purchasing while I tried to return to some semblance of the weight I believe I should be. Bouncing around between “emaciated” and “overstuffed” has been rough. I don’t think I’m alone in my cancer-associated weight gain (which in my case is pretty much just emotional eating, unless it’s the steroids continuing to exert some evil influence). But that doesn’t make it any easier to accept or be okay with. The matter of having small children who enjoy sweets without guilt (and in much more moderation than I could ever manage), and being married to to a man whose metabolism has thus far escaped the ravages of time does not make things any easier.
I had to order everything online, because my new working mom lifestyle does not lend itself to shopping trips. It was a revelation to find a pair of jeans that fit well, and even a skirt that doesn’t look too bad (but is simply too lightweight to wear until perhaps a month from now). After setting a particularly bad fashion precedent for myself in my new workplace, I am poised for a comeback. It couldn’t possibly get much worse, after all…
Exercise, like clothes shopping in a store, is another elusive notion. I did manage to go to two classes at the gym last week, but this week doesn’t seem very promising for that sort of thing. I have access to a free and not half bad gym at work, and even walked over to take a look at it last week, but this morning was so crazy, I couldn’t get my thoughts together, let alone my gym clothes and a combination lock. I’m hoping to manage it tomorrow (even if it means doing something truly crazy, like preparing my gym things tonight!).
But this week also brings Purim, which carries with it delicious indulgences, like hamantaschen and alcohol. I’m making my own hamantaschen this year, which will be quite an enterprise and result in perhaps too many cookies “sampled.” I have a brand new jar of Nutella in my house, ostensibly bought to fill the hamantaschen, but I spread some on toast this morning and called it breakfast.
That took me back to my worst year ever in school, 8th grade. I would bring a Nutella sandwich to school pretty much every day. I don’t think eating that for lunch made my day better, but I am pretty sure it kept my day from getting worse.