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.

And honestly, what more can one ask for?

Yesterday, after finishing my lunch at work, I remembered something. Back in September, when the most recent part of my ordeal began, I spent a couple of days in the ER following my lung biopsy. A possible side effect of a lung biopsy is a collapsed lung, and that happened to me – just not right away. They monitored me for a couple hours after the procedure, did a chest x-ray, and all was well so they sent me home.

Since it seems like part of my genetic makeup to always be an anomaly, by the next morning my lung had collapsed. It was a slow leak, like you’d find in an old tire. I returned to the hospital and spent two days in the ER, chest tube inserted and hooked up to suction, until my lung could hold air again. (There is more to this story, but I’m saving it for a humorous essay I’ve been meaning to write for months.)

When I was discharged from the hospital, J and I went looking for a cab to take us home. We walked out of the hospital around 5 pm, which is one of the worst times to look for a cab, because drivers are switching shifts. We wound up wandering the streets for almost an hour until we found a taxi.

Just before finding a cab, we were stopped on the corner across from the hospital waiting for the light to change. I spied the Google Street View car going by, and even though I was exhausted and miserable from our taxi quest, I told J we should pose for a photo.

Yesterday, all these months later, I found us.

There we are, standing on a street corner looking as though we were on a date, or about to go grocery shopping, or anything else normal – anything else but what was actually happening. Sure, we’re anonymous and blurry, but it’s unmistakably us.

Finding this cheered me up a lot. I’ve been wallowing lately, especially at night, since I’m in that period where the excitement of my January scan results has worn off, and I realize the next scan isn’t until April. I’ve been doing ill-advised things, like searching the Internet for answers I’m not going to find about my chances of survival beyond five years. When you’re dealing with metastatic melanoma in the age of immunotherapy, however, it’s unlikely you will find any accurate answers to a Google search. There continues to be a lot of outdated information out there. And everyone’s experience is so different.

So it helped to find this photo, this document of myself at the beginning of the ordeal. It simultaneously reminds me I am: a) completely normal, and as unremarkable as a fire hydrant, and b) a medical anomaly who has amazed my doctors before with my body’s capacity to destroy tumors, and who will likely continue to do so.

It wasn’t a very serene day at work today. The pace seems to be picking up hourly and I am suddenly feeling like I’ll need to figure out what to say no to. After only two weeks on the job it’s strange to be at that point already.

I taught a class this morning I wasn’t extremely well-prepared to teach. A colleague observed me and she probably wasn’t too amused, particularly since I’m taking over responsibility for this department and she’s the one who designed the class in the first place. She was kind enough to step in for a few minutes and save my ass, for which I was grateful. But it was also a good wakeup call for me.

On the plus side, I haven’t lost my speaking skills, and am still able to engage with a classroom full of students in a lively way. That is a relief.

I spent the afternoon preparing for a class I’ll teach on Monday afternoon. I am only about a third done with the prep. I was quite stressed about it when I got on the train home.

The train ride home is pretty magical, though. I always get a seat, which affords me nearly an hour of time to separate from work, doze or read or listen to music, enjoy the limbo of being in between work and home.

Tonight I was dismayed at first when a man boarded and proceeded to spread himself out across three seats next to me – he was quite large, and hyperventilating. Once he caught his breath he started sniffling. This week on the train I keep winding up next to coughers or sneezers. Now a sniffler.

In the moment where I was deciding to either be annoyed with the sniffling or  else let it go, I remembered my kids speaking about chesed (“kindness” in Hebrew, a recent focus at school). So I chose a third way – to be kind. I handed the sniffling man my last tissue. He thanked me.

Then I wondered what else I could do to show chesed. J was home with the kids, and he had made a delicious dinner and ferried the kids back from a sleepover and a dozen other things.

Often when I walk in the door I am instantly angry or stressed out about the chaos in our home (slightly mitigated by the Lego organization scheme, but not entirely). I am grouchy and uncooperative. It’s almost like I’m back on the steroids.

So tonight, sitting on the train home, I decided things would go otherwise. I decided I would get home and immediately find out what still needed doing, and do it. I’m embarrassed that I needed to make such a conscious attempt to be helpful. But it kept me busy, and kept me from getting angry at J or the kids or the clutter.

I didn’t know the NYC subway could bring about such a meditative state, but I sure am grateful. (At least, until the next time the local goes express or the express local.)

Dear Young A,
You? You, my sweet baby bunny? There is no way you can be five years old today. It’s not possible that it has been five years since I, bursting with child, ascended the very steep hill from the ice-covered parking lot (which was cheaper than the covered garage) to the hospital birthing center to get you out. Not possible it’s been five years since we brought you home, just 14 hours after you were born, right in time for you to meet Young J (your lifelong friend and great admirer) and for me to put him to bed with a lullaby.

So much has happened since then, Young A. Most recently, you learned how to read, even though we kept doubting you knew and thought you were just memorizing your books. Then this weekend you cracked open a fortune cookie and read your fortune all by yourself. “Now is a good time to finish up old tasks,” you read, with a satisfied, cookie-flecked grin.

Old tasks. What old tasks can you possibly attend to, my baby boy? Perhaps you could learn to stop crapping your pants when you’re having too good a time to take a break. Or maybe you can get back to finishing your milk again, my picky little bugger. Perhaps you can let your long-suffering big brother give you a kiss goodnight again, instead of the hugs you cruelly limit him to lately.

None of this comes close to evoking a true picture of you, my dear, sweet Young A. When you aren’t whacking your brother on the head, or inadvertently hurting your parents, you happen to be the nicest, most loving, eagerest to help and most empathetic little person. You adore learning. You love to cook. And dance. And make up songs which rhyme, even when you have to scat your way through three-quarters of the line.

You aren’t someone I would ever want to hurt in any way. And yet, without meaning to, I did. I got sick, and that made you worry about me. I’m not sick right now, but the memory of it is recent enough for you to still talk about it, to still nervously pick at your thumbs or your lips until they bleed, to mention dreams of monsters keeping you up at night (even if they aren’t, really, that we can tell). I could apologize forever for the uncertainty this caused, the way my illness shook your foundation. But it wouldn’t help, not really, because you’ve  lost some measure of faith in me and it seems impossible it will ever return.

Tomorrow you will wake up, and see the birthday banner we hung for you. You’ll open some presents and maybe eat some cake for breakfast. And then I’ll need to do something I haven’t done, improbably, ever. I’ll have to go to work on my kid’s birthday. You don’t have school, and you’ll go on a fun outing with your brother and a lovely babysitter. God knows, I’m not the first parent in the world to face this. I know. But I’m trying to get all the crying out of the way tonight. For your sake, and mine. You don’t need to see me diminished in any way, if I can possibly help it. If it takes all year, I will make you trust in me again.

And yes – I’ll go to work, because you have informed me you want to take another trip on an airplane this year, and you know I will earn money that can make that happen. I will go to work to earn wings for you, for all of us.

Love,
Mama

The future was when I stopped waiting for the email to come in to HR stating that my work email could be activated. It was supposed to come at noon. It may have arrived at 12:05. I should not have gotten to HR early. After that, I had to take a form to one office to get my email activated but still had to trot across campus to get my ID card. This is how a career restarts – not with a bang but a round of bureaucratic errands.

Have I done work? I have redirected a few people lost in the stacks, because that is what my office looks out on:

That isn’t what I was hired to do, of course (contrary to what a lot of people think library work consists of). But in a library it’s never a bad idea to be helpful, even if that essentially involves reminding people the order of the letters in the alphabet. Repeatedly.

I did finally get email and reach out to the people I’m supposed to be helping (students and faculty). I got a couple nibbles right away, which was good, even though one of them seems poised to turn into a cautionary tale. Today I will meet with a professor of economics who is poised to unleash 48 of her students on the library with a need for 30 years of time series data that may be impossible to find. I get to convince her that won’t be a good use of anyone’s time, in a way that doesn’t sound like I am primarily concerned about the well-being of the library staff they’ll hound to death if they are given this impossible assignment. My office doesn’t look out onto an outside view, but hers is in a basement, so my empathy is already summoned.

Speaking of basements, the college where I am working has a fun network of underground tunnels that get you from building to building without encountering the elements. (I should ask my colleagues if the tunnels were originally intended for civil defense.) Yesterday in the tunnel I passed someone who is on the faculty now, but years ago taught some great gym classes I took at my former place of employment. She remembered me right away. She encouraged me to go to fitness classes. I hemmed and hawed. It’s my first week. I don’t even have a babysitter yet. I’m just here for the semester.

The fact is I probably should do something physical. It’s only been four days and I already can feel the parts of me that are prone to seizing up doing so. I don’t always sit at my desk in an optimally ergonomic way. What I have been doing, however, is trying to shed my very poor habits acquired after years at home with kids: too many snacks too often, large portions of food, “why-not?” intake of cookies. There is a water cooler I’ve  made very good friends with already (though its function is functional, not metaphorical – I have yet to run into a colleague there).

What I haven’t been thinking about at all is cancer. Which means I haven’t listened to this all the way through yet. I will at some point. Maybe after my next scan.

I got a job. Yes, it’s only temporary, but it is at a library I like, with colleagues I respect (and some of them I already know), and I am beyond ecstatic to finally contribute to our household bottom line once again with something more than just making a good meal or staying on top of the laundry.

I won’t lie, I am also looking forward to the commute. I have a huge pile of books I want to read. Maybe I’ll start listening to one of those newfangled podcasts all the kids are talking about.

The last time I was a commuter, I was pregnant with Young J, and then later I was anxious to get home to him at the end of the day. I won’t have anything close to the same anxiety now (it will probably be replaced by new anxiety).

Will I miss picking the kids up from school? Yes, especially seeing them hug each other almost desperately when they reunite at the end of the day, with such fervor that parents sometimes ask me if they always do that. J and I may have made a lot of mistakes in raising them, but they certainly do love each other. (Will I miss the constant clamoring for sweet treats? No.)

I’m so grateful to have a chance to re-engage my mind in something other than making lists of things to do around the house, many items of which I have yet to check off. I’m leaving a legacy of chaos here, sure, but it’s a loving sort of chaos. At least, that is the story I will tell myself.

I’m alone in a hotel room! Darkness has arrived and I’m decompressing from a whole day spent in a windowless conference room playing the role of professional outsider.

For the past year and a half, I’ve been volunteering at my kids’ school. My mom volunteered at my school when I was a kid – she organized events like International Night, or collected lunch money. I’ve done my share of PTA work, but being part of a small, progressive school community can also offer novel opportunities to get involved.

My kids’ school is participating in a network of similar schools which each have designated teams to identify needed change in the school, and to implement this change by learning the principles of design thinking and adaptive leadership. The trick is, I am the only one in the room who is “just” a parent. Everyone else is a teacher or school administrator of some type. This was beyond intimidating for me last year, but I’m well past that now, finding myself giving advice in group discussions to heads of school who may even actually be listening to me, despite my utter lack of credentials.

Last year, our team’s work led to the very exciting apex of changing the way Young J’s classroom is set up, to accommodate kids like him with special needs. I spent a day at school with Young J, producing a “journey map” of his day, making notes of where things seemed to go differently than anticipated. Our team set up a prototype of a new classroom configuration, and had the kids test it one morning. It was incredibly satisfying to have that kind of direct and lasting impact on my kid’s learning environment.

That was last year, though. This year, our team, now reinforced by an extra member, has struggled with a number of things while trying to identify a new challenge to address. One of the many challenges was my disappearance from team meetings while I was sick last fall. Today, we had to create a team timeline showing the highlights and lowlights of our work thus far this year. I drew a line that went deep into the negative side of the graph for November, and punctuated it with a sticker of a face showing extreme disgust. It felt good to do that, and to see that that was then, and this is now.

Our team continues to have a number of challenges to its progress this year. We have all day tomorrow to grapple with them. But I am beyond happy I’m no longer one of them.

Meanwhile, back at home, J is leading the kids through the next phase of a design thinking exercise I started this weekend with Young J, focused around reducing the chaos in our house created by Legos. I spent some time interviewing Young J the other day, asking him how he thought the bricks would best be sorted and stored. We sorted a portion of the bricks that way, and then I ran a prototype in which he took an instruction booklet and tried to construct a vehicle by locating the pieces within the new categories we’d sorted them into. I took notes. I decided that sorting by color, an idea I had previously dismissed out of hand as being excessively fussy and Pinterest-y, actually did make some sense in terms of ease of locating certain pieces.

I texted J as my meeting wrapped up today suggesting that he have the kids sort the bricks by color. He’s spent the whole day with the kids, ferrying them here and there, and I assumed he would tell me to stop pestering him. Next thing I knew, he texted me a photo of Young A surrounded by bricks sorted by color and in containers! I could thank the design thinking gods, but first I need to thank J for following along and helping me achieve my vision, as hare-brained as my scheme may seem.

Thank you, J, Young J and Young A. You complete me.

Greetings to those who’ve arrived here from my patient profile on The Answer to Cancer!

I’ve been writing this blog with a known audience in mind until now. But once the posts reached a critical mass, I decided I wanted to try to boost this blog’s readership, specifically to include people who, like you or your loved one, may be looking for something beyond clinical information about immunotherapy. Something a little closer to actual, lived experience.

I haven’t been great about tagging the posts by subject (I started to, but my system fell apart pretty quickly) so here’s a rough approximation of what you’ll find when:

Late October: The dawn of the blog. The very beginning of my ipilimumab-induced colitis.

November: The worst of it. Colitis, steroids, and infusions. Finding a way to stay sane during it, finding a way out of it. Also, the end of the road for me with ipi.

Thanksgiving: Things get way better.

December: Processing what happened, anxiously awaiting my next scan in early January, celebrating birthdays and holidays.

January: GOOD NEWS. Immunotherapy works.

Throughout: You’ll encounter posts that have little if anything to do with cancer, links to YouTube that may not interest you at all, and a fairly irreverent attitude. Sorry if those get in the way. I’ve needed to write for a long time, and this blog turns out to have been my point of entry.

Anyhoo, thank you for reading – whether you are new here or have been here from Day 1.