I half-joked a while back about checking in on certain breast cancer blogs and wondering if long time no post=dead. Morbid, I know, so I felt I should check in here, 4 years after my initial diagnosis, and...pregnant! 28 weeks, to be exact.
It's been a whirlwind the last 1.5 years, but here's the gist: In Feb 2019, I was given the green-light to come off Tamoxifen (post-cancer med, estrogen blocker) and try for a baby. Oh and no biggie, I had two years to both conceive and have the kid, then right back on the meds I'd go. I entered the POSITIVE trial at Dana-Farber, where they'd track my pregnancy. I harbored high hopes I'd help others in my position down the road. Welppp, right after signing up, my mother began her sharp decline and bombing into Boston for 2-hour blood draws and questionnaires about why I STILL wasn't getting my period proved to be too goddamn much. Plus frankly I didn't want to associate my pregnancy with cancer. Bad juju.
After my mom passed in April and the drugs had washed out we tried naturally for a few months, but shit wasn't working, and therefore not boding well for that timeframe. When we got back from our glorious(!!) trip to Italy in January, Mike and I had only 3 months before our window closed. In this time we had many conversations over how we'd be okay if we were never parents. I don't know how much of that was an emotional defense, but, it helped a little with the stress. We ditched the "natural" route and implanted two embryos in February, which turned out to be ONE WEEK before Covid shut down all non-essential procedures (IVF included). Our window would have been up, and we'd never be able to try again.
Thankfully, one of those embryos is pushing on my ribs as I type. (PS I wrote about the near non-existence of these embryos in one of my very first posts.)
Anyhooters, being preggo during quarantine has been strange (Mike waiting in the car at every appt, not really knowing what my docs look like behind their masks, me panicking over whether my boobs may still kill me and leaving my son (yes, son!) motherless, etc., etc.,) But I try, try to keep all that at bay (lots of walks!) and for the most part have been successful. Quarantine has been a bit of a blessing in that I could slow down and take care of myself and blot out the world around me when necessary. It was glorious in the early days when I was bone-tired.
I jotted down my thoughts from those days, below, if anyone has the time or interest. I mean, I don't now if anyone cares and don't blame ya if you don't, it's more for me to look back on, anyway. I do want to share some links to resources below if there's anyone reading this who's been through this or may go through it in the future, though.
Snippets from my actual "PREGGO / COVID DIARY" (yes, this is what it's titled in my iphone notes)
Early Feb [right before I got pregnant...]
So. T-minus two months till our oncology-approved baby-making window closes.
Here’s the deal: my body is uncooperative (you mean making my ovaries go to “sleep” via meds for two years means they won’t wake right back up?!) and this whole process is very bizarre and one I don’t share with many people. Of course those struggling with fertility I have a kinship with, but it kinda ends there, because for me it’s a definitely no-go zone come April and that’s that. Either we have a shot to be parents by then or we will never be (and yes I know adoption is an option, yada yada). It raises all these questions and what I’m confused by is how much I actually want it. Because I’m starting to accept the possibility it will never happen and that will be sad and frustrating (cuz the choice won’t be mine, it will be cancer’s) but we may be a-okay in the end childless. I wonder all the time, do I want a kid because I feel like I should, due to my age, due to being an outcast among most my friends? Or because I have a maternal pull (I don’t, really?!)
I may be building up an emotional defense, talking myself down so I’m not hurt come April, I don’t know. I do know I value my own health over a baby unborn. I just do. Hormones (pregnancy and otherwise) are BAD for me. Like, really bad. Like, recurrence and chaos in my boobies and body bad. “Doing everything possible to be a mom” (advice from most people) seems irresponsible for me. That would mean injecting myself unduly with harmful things and to what end? To leave a baby - if one materializes - motherless?
I guess all we can do is wait and see. And maybe, if that window closes in April, when I’m ordered to go back on those lifesaving meds, it’s best if I don’t know what I’m missing.
April [early, 2 months PREGGO, wasn't writing a lot and very superstitious about this baby miscarrying, because I'm anxious like that]
Covid-despair came today. I’d been fending it off. Keeping busy, planning my meals like they were social engagements. Only thing to look forward to. Frozen Arancini balls tonight!! Rejection from an agent. (Another one). Fears over never being able to celebrate this pregnancy or be in fear during it which will harm the baby. I hate letting the fear and despair in but here it is on this 45-mile-an-hour windy ass fuckin day with whipping rain pellets that won’t let me set foot outside without further misery. Solutions? sit at the beach in your car! go take a zoom yoga! (is there anything more depressing than zoom yoga?!) - I’m sorry, but the concept is just TOOO much. The zoom calls - I never want to hear that stupid company name ever again after this.
I have’t been writing about being pregnant at all! How remiss I’m being. Especially with all this time on my hands. I get my pregnancy thoughts out on Facebook, of all places, on my Nov 2020 babies group. We’re all going through the same thing - quarantined and pregnant (sounds like teenaged and pregnant), with our solo missions to the doctor’s office and masked interactions with ultrasound techs and staying 6 feet from the reception desk and telling about 8 people on the way in to the hospital, and on every floor and room you enter, that NO I have not come into contact with anyone with COVID and NO, I do not have any symptoms of flu or coughing etc etc etc. Ah, such is life. On the whole I’ve been absolutely okay. Aside from several miserable stretches of weather in March and April - blessedly keeping asshats inside their homes, I guess, if you want to look on the bright side, but May has been pretty delightful, sunshine-wise. I go on soooo many walks (try to sneak jogs in there too) No bump, really, just looks like I’m kinda fat in the belly.
I feel like I should add in some, like, details about what’s been going on, for posterity’s sake. WTF have I been doing?! Ok, symptoms? Fatigue for the first few weeks, and since I’m trapped at home, and the weather so terrible then, I would gladly sleep my life away for 2 hours a day at least. Distance learning is a fucking chore and so terrible and not beneficial to the kids or me or anyone…what a joke. 4 more weeks of THAT, thank god.
I knew it was a boy the ENTIRE time, I just knew it. After getting acupuncture that day, and having that crisp vision of a little towheaded boy, I think on a beach, he had some curly locks, it was so clear. I mean I dismissed the image after we found out we had twins at first, and leaned heavily on the medium lady (who technically was right, 2 little souls TRIED to enter my uterus) but one survived and he’s my little baby boy! We’re considering like 5 names but, still so long to go, for our fickle little heads to come up with excuses why one of the names sucks or what not. Right now I’m looking at the chickadees in the little birdhouse in the backyard, the little family that’s building their life, too! Cardinals back here, galore, and I’ve finally seen hummingbirds up close. They love these pink little trees.
I adore the spring so much. Its’ such a “SPRINGBOARD” for new beginnings.
I rarely get sad about my mom. I wonder why that is. It’s a bit disconcerting, actually. Why don’t I miss her more? I will say childhood memories have come to the fore a bit more, forgotten ones, of being younger. Happier ones than the shit I’ve seemed to cling to all these years, to convince myself my childhood was shit. And it wasn’t SHIT, I know that, but, it really wasn’t all that happy. My mother, how could she be happy? She was PISSED. At life. At her lot. All the time.
I will put this out in to the universe. I’m going to SELL this book — and that will lead to more books, and that will lead to more.
July 20 a3:40am
Preggo insomnia! Comes once a night for an hour or two. I’m snooogling my pregnancy pillow as I type. It’s 24 weeks yesterday - over halfway, and I’m feeling kicks right now. Or whatever. Flipping?
It’s been a glorious summer so far. One I hope I remember and appreciate.
Emotionally I’m doing great and we are happy and soaking in summer and our last sleep / independence filled days.
I’m writing a brand new draft of the Sham after that tough feedback. I listen to On Writing again, his words ringing truer than ever, in hopes I’m getting things right this round. Aiming to keep momentum and doubts at bay and to revise a true second draft (NOT as I go!) and to steam ahead with this before the baby comes. Joy is writing daily with no obligations. Joy. And not forever with this new baby...
School up in the air for fall. Covid is insane and everyone is insane and opinionated and parroting fears and political talking points and the disease is insane and unpredictable so wtf is everyone supposed to do? NO ONE KNOWS. And let me tell ya that concept drives people NUTS. Buncha control freaks if you ask me.
What a time to be pregnant but also a great time. Everything has slowed. People will look back on this as a blessing to have been forced to slow the fuck down.
One more month of peace before school madness. Four until labor! Nursery stuff planned but not here. Shower in a month. Wonder how many will go..maybe few.
Sad sometimes. No mom to see me be a mom. It’ll hit me hard later, I know. I hope I don’t get PPD too badly. Or at all, if I can swing that.
(update) I deleted my last post honestly because it was written during a bad time and it was incredibly Debbie Downer. Plus it had a swear in it and can't have the kiddos see that! Doing better now...
Keeping her picture though.
The Anne Leete power sneaker / turtleneck combo.
I let my domain name lapse, and I figured I'd get around to reinstating it at some point or another, when I jolted up in bed the other day and thought, shit, people might think I'm dead. That sounds dramatic but literally when I'd come across a blog of someone who'd had cancer and it was defunct, or neglected, my first assumption was that they croaked. I did not croak. I am here.
My mom's not, so I've been wading through that experience, quite literally wading through the metric tons of her belongings that she kept inside her house. I wouldn't call it hoarding but I'd say...a very extreme case of a pack-rat. On the plus side, it's allowed us to explore her as a person through tidbits of her life (diary entries, little pieces of paper she'd jot thoughts down into), and on the down side, it's been an emotional excavation, a prolonging of pain and grief and stress. The house itself fell into some degree of disrepair in her later years, as her mobility declined. Plus, absent of taking her places when she wasn't able, everyone brought stuff over instead. And so she accumulated and accumulated, and whenever anyone would try to--God forbid--move something, she'd call out (not even seeing you!) - "What are you doing in there? Leave that there," or something like that, so you wouldn't dare throw anything away.
Aside from all that, it's my first free summer since age 13, now that I've become a teacher, and while much of it has been dedicated to the house, I'm looking forward to some rest. I mean, I need a goddamn break. I'm writing every day and reading and working out, so far. It's glorious. Not having to squeeze "free time" into finite vacation weeks (it never felt truly free), to wake up, to know I can have a casual routine, not the pressure of being casual, of "relaxing" but to truly just go about my day without the prospect of work...it feels wonderful.
The writing feels a bit like a job but a job I like, plus my little side gigs, but I do those when I feel like it...because without them I think I'd feel like a deadbeat.
Here's to summer, to emotional excavations, and to feeling free.
PS: I was honored to be asked by some readers of The Hollow who were taken with my experience (I'm assuming they read this, or used to read it) and they asked for me to send them words of encouragement. I found myself bursting at the seams trying to fit in all my anecdotes and advice into these little cards, so what I left out I'll place below. I left this out, because when I re-read it, it was much too geared to my mother's death, and pretty dark. Really, it was a note of reflection to myself. Here goes.
My mother died two months ago (seven years, in increments of deterioration and indignities, s l o w…) a terminal diagnosis that went deeply south in April. I believe I saw what could possibly have been the worst death many will witness in their lifetime. And admitting this to anyone is hard, because no one wants to hear that, and everyone wants to believe in this self-assured peace that washes over you as you die, and the truth is, no. Sometimes people are placed in agony and it is not their fault and they did not deserve it and all you can do is wish for the end, so that they can truly be at peace. And she is at peace. And I am at peace for knowing this, and I see her in the cardinals and I smell her in the lilacs. And I am glad for the experience because it truly makes many of my worries vanish, it clarifies my wants and needs and cares. Because so long as you’re not dying, you are living.
Also, I do feel that to be 100% honest with yourself, with how you’re feeling, with how other people make you feel, is the key to growing as a person, and we should always, always, always, be actively striving to become a better person. So if you’re going through hardship, acknowledge the pure, unadulterated shit of it. Talk to people about it, people you trust, and of course, a therapist (I have had, at one time, two of them listen to me yammer on and weep!). Keep your body moving as long as you are able, and keep your friendships dear and close and nourished, stay interested in many different areas of life, and keep a balance of work and play and love. We need it all. And you want it all, and there’s no shame in that.
My mother was a hard-ass English teacher who dealt with far more hardship than anyone should ever face, who loved her friends and her children more than her herself, who was a complete bitch sometimes and would never apologize for it, and whom I had the honor (but not pleasure, not the slightest) to see imprint and then absent this earth.
I’m finding it hard, these last couple days, after getting the final call that she’s gone—to transition from her dying to her death. How do I move away from the increasingly familiar feelings of dread, anger, distress--to simply sadness?
I do feel immense relief, but also a pressure to transition right into grieving mode. But I've spent so much time waiting, and fighting alongside her - how do I just shut it off and accept she's finally gone? How do I let the rest of the shit go?
A friend emailed me and said, half jokingly, that she was always here to talk, as we are both in the Dead Parents club, and that she finds it odd how weird people are about death, about how we sweep it under the rug, how many aren’t comfortable talking about it, as if it’s not a perfectly natural part of life, a prescribed fate for all of us.
I agree, but I had this to add: how much do you convey (and do you? or do you leave it out?) of the heart wrenching experience of watching someone die for weeks, months, years? When it's not always a completely peaceful end? (Thankfully she did go peacefully, when she finally surrendered and let go).
It's surreal to me to expect to move now into mourning, after being in defense mode for so long. My fists and jaw were clenched for weeks, months. Headaches pounding, heart hammering in my chest, day in and day out. But I had to hold that all in, because I didn’t know when it would end, not exactly, and why burden others with that distress, that pain?
And now, she’s gone, and now I can talk about the death part, because, it's safe?
I'll work on it. This transition. To mourn her, the woman, the mom, the teacher, the human—not the sick person, and she always despised being considered "sick". She always said, “I’m not sick, I feel fine…it’s juts this cancer business that’s in the way” - as if it were an inconvenience more than a disease. Even when she was clearly in pain, she never admitted it. And that attitude is what carried her over and beyond the myriad prognoses over these 7.5 years, this denial, no, rejection, served as a propellent for her to keep going. To never give up.
I’ll never know or experience such strength again. I guess recognizing that is my first step to mourning my mother.
I've avoided writing an update post about myself the last few months, years, really, due to my mother's situation. In her shadow, I always felt my fears and post-cancer "news" were silly, were inconsequential.
But I've spent a long time in this shadow, so I guess I'll start from the beginning. And it'll be through my lens, not hers, so forgive me for some relaying some facets of this situation that may seem hurtful to her. But she will not be reading this. So, I admit, I'm being a coward and writing about it now.
In 2012, my mother's breast cancer returned. She was given a vast, and cruel, prognosis of 5 months to 15 years. She was told at the time that it was slow moving, and that although it had spread to her breast, liver, bone, and lungs, that all in all, they would treat it as a "chronic illness." This proved no comfort to any of us, really, when at its base, it was still a Stage IV, AKA terminal, diagnosis. Each year, we wondered if it would be her last, if the end was nearing. Every interval of decline, every ER visit or spread, would indicate as such.
But generally speaking, for about three years she was, essentially, okay. She lost her hair again, and was a cancer patient again, but she had her faculties. But around 2015, she began to get worse due to the spread to her spine, the pain exacerbated by any slight movement. The protocol, whenever something new sprouted up, was to "zap" - her term for radiation - the problem, and switch up her chemo cocktail. Time crawled on, and she grew weaker. Her mobility suffered, eventually moving from a cane to a walker.
Amid ALL of this madness, I was diagnosed in 2016. This awful, horrific "I have cancer too" dynamic caused our relationship to strain. And this is so sad to me now. But then, I was angry and hurt. My mother's chosen tactic for "facing" anything difficult up to that point was a mixture of denial, outsized confidence that she could surmount obstacles others could not, sheer stubbornness, and self-absorption. For instance, as I navigated treatment--treatments she'd gone through herself--I'd call her while in pain, hoping for a sympathetic ear, a Mother. However she'd respond with a story about herself-- about how she handled the same issue. And perhaps in efforts to calm me, she'd relay her experience flippantly, off-handedly. How it wasn't an issue for her. How strange. That enormous shot you had to get in your spine, the one reported to cause crippling pain for most everyone? Hm, well, I never felt that way, it never bothered me...
I'm sure in her mind she believed she was "relating" to me - but I saw it as her denying me my pain, that she dealt with it in a superior, stronger fashion. She was not a caring mother lending a sympathetic ear in these days. She was not capable of this. Living alone, and dealing with a worse prognosis, everything was about her, and had been for some time. There was not room for my worries, my fears, because I think in a way they threatened to bring hers to light, something she chose doggedly not to do.
In August of 2016, the same week I was due for breast surgery (lumpectomy), my mother started falling, and it was determined the cancer spread to her brain. The week ceased to be anything about me, and all about my mother - my worries swept under the rug for the more dire situation: my mother likely not making it through brain surgery. But she did make it through, and afterwards, She didn't ask me how my surgery went, and yeah, I know, boo hoo, but I felt neglected, dismissed. Afterward, it continued. One example: my mother chose to send out her email announcements about her own status, her own issues and health updates, on Wednesdays. I'd get these emails as I sat in my chemo chair. Wednesdays were my treatment day. I'd stare at the email, wide-eyed. She knows what day it is, doesn't she?
Between the two of us, the situation has been frightening and exhausting and at times, seemingly never-ending.
But what has become very apparent in her sharp decline the last few weeks, is that it will end. Recent falls, caused by more lesions in her brain, have led to a steep decline in her mobility (she can't walk at all, at this point) and cognition. She now needs 24/7 care, which eclipses the cobbled-together care team of friends (mostly friends, mostly her angelic, wonderful friends) and family. So as of yesterday, hospice has been invoked.
It's just been....a lot. The prior week, Mike and I spent hours in fertility offices and my oncologist office, trying to build a future, trying to hope about kids and a normal life. On my way to a CAT scan my mother falls, lands in the ER, and sharply declines from the same disease that I just so-called "beat". I try to cling to moments of levity. She eyed me yesterday with a strange scrutiny. "What?" I asked.
"So do your students say anything about your hair?" she asks back. I stared blankly at her, confused. She clarified: "With how you wear it the way you do. Do they say anything?"
I try to disentangle myself from an imagined shared fate. I try to stop the voice that says, "You will be her someday. Why would you be spared, if she's not? What makes you so special?" That voice is insidious and ever-present and terrible. It prevents me from feeling relief or happiness at my own good news, like sharing my husband's enthusiasm over trying for a child in a couple months.
It's been year after year of scare after scare - blood clots, surgeries, ER visits, last (maybe) Christmases. Re-configuring responses to people who innocently ask, "How's mom?" and feeling, again and again, like the Girl Who Cried Wolf.
But now it's all coming to an end and it's just as awful as we all imagined it to be - it's just as painstaking as I feared. I wish I could say it wasn't. I can only hope that there is light at the end, that I can have a portion of my life unencumbered by emotional distress and fear. Mike sent me a quote, which I've been running over and over in my mind:
“The future bears down upon each one of us with all the hazards of the unknown. The only way out is through.”
And as KV would say, And so it goes. Onward.
I'm mentally preparing for a 3-month checkup at Dana-Farber. No scans are planned; those come in January. That brings some relief, but it's not like I'm lying awake at night fretting over the appointment. I'm not longer constantly awash in the terror that used to douse me each and every day. Thank God.
That's not to say there aren't are some inklings of intrusion. There's the smell of wet leaves as I walk with Lily in the town forest, which offers a quick flash of me huffing up small inclines and adjusting my wig in fall of 2016. There are the Halloween "memories" of me as Eleven from Stranger Things, nose fake-bloodied.
These intrusions sometimes compound themselves. For instance, seeing that fake bloody nose hurtles me even further back to the summer of 2016 when I would get actual nosebleeds, constantly, while on Taxol. (That was the lovely drug that also gifted me mouth sores, fingertip numbness, and sensitivity to light.) The sensation, and then the sound, of blood dripping down ]and plopping onto the table on which I sat was unsettling, to say the least.
One night in particular is singed into my brain. Due to the unpredictability of the burgeoning bleeds, I had to cancel plans last minute and texted my friend something like, "Sorry, can't come out, I just bled all over the table." I threw in a "haha" after. I felt morose: ugly and old and weak and disgusting. The expensive wig on my head was ridiculous. The bandana holding it taut, hiding the "realistic lace front" (designed to resemble a real hairline) was absurd. Who was I fooling?
This is going to sound vain, but up until diagnosis I'd been an attractive 31-year-old female, in good shape with great hair. I was used to eyeliner and a cute top and a good hair day being met with approving eyes at the bar or restaurant with my friends, my youth not yet faded. (How nice for me, I know, I know.) Now I looked off. I knew it. I looked off, even under the wig, my dry eyes bugged and my cheeks puffed. And to be honest with you, I still don't think I've gotten it back and maybe never will. But the difference now? I don't care much. I look fine. I'm here. That's something. It's everything.
But there are small victories that still come. Last week, in the mirror, my ponytail bounced while on the treadmill for the first time. I mean a real flouncy bounce. At my gym you're all lined up facing a mirror. You can't not notice the people beside you on the treadmill, and I couldn't not notice their flouncy ponytails for over a year--Terry B.'s long blonde pony, Brianna C.'s cute low braid. At the sight of my own I was ecstatic, glad for the sweat masking my tears.
(More milestones for anyone reading this going through treatment: Wringing the tips of my wet hair after a shower. Grabbing that fistful of hair, then a long squeeze, is one of the best sensations I've ever experienced. Another: Straightening the top layer of hair (mushroom top) and it laying flat. Another: Using my beloved turby twist to its intended effect...)
As you can see I'm still obsessed with hair and this is not new. Before I was diagnosed, I mourned my mother's hair loss, twice, and now see it was a spooky foreshadowing of my own.
Job updates: All is going well. Trying to be a better teacher every day and learning from my (many) mistakes and miscalculations. Loving the kids (most of them). Trying to make them better writers (and trying to make myself remember how hard it all is. I mean, I'm 33, and it's still hard. I need to give them a break.)
Now please excuse me as I go straighten my hair, readying myself for a Halloween party in which there will be no bloody noses or hairless heads. I'm going as a Christmas Tree. Ho, ho, ho.