Leveling up

I’ve been in maintenance mode for close to four years. It’s a strange place to be. I get to mostly live my life and pretend I’m a real girl, working for a living, stressing about bills, getting annoyed with traffic and wondering if I should get a hot fudge sundae or not. 

I mostly don’t feel like a cancer patient. I swan in and out of the clinic every three weeks, my hair and fingernails intact, and stay for a 90 minute bio-therapy infusion while I chat with my favourite nurses about travel and Netflix and the weather.

I get pulled back down to patient level occasionally when someone asks me “how long do you have to do this for?” and I don’t have an answer. Or someone I don’t know yet is taking my blood and marvels at the fact that I still work full-time. "You're amazing." Not really.

Or I get that look. You know the one. The “it’s cute you’re trying to live your life normally but I would die if I had the c-word hanging over my head” look? Fuck that look.

Or when your oncologist suggests that you’ve had a good run and you should be grateful it’s been so long since you’ve had a questionable blood test. “It’s been a few years, Carissa. It’s not totally surprising that something abnormal came back.”

For the past year, my CEA level has been increasing. CEA stands for Carcinoembryonic antigen and it’s one of the main tumour markers found in your blood. As with everything cancer-related, it’s hard to pronounce and an asshole when it comes to being reliable. When your CEA is low, you’re generally cancer-free, but not always. When it’s elevated, it can be an indication of cancer or recurrence, but not always. Below 5 is generally ok. I’m at 15 as of January. 18 months ago I was 1.7.

This doesn’t mean much yet, which is a sure sign I’m getting sucked back into the cancer system. I do know I have to go through more diagnostic tests: moving up a CT scan, getting a bone scan for the first time in eons, more blood tests. Then I get to wait for results, hug my daughters incessantly, and think about death every moment I’m not occupied. I'm used to it by now.

I’ll try to be chill. I know this drill. I know you can’t eat and breathe the stress. It'll destroy you. I’ll be a dick to the people close to me sometimes, but I'll be mostly normal. I won’t want to talk about it. Then I’ll get to scan day and feel as ethereal as a wisp of air, floating over the dots on the hospital floor. Then I’ll wait by the phone. It'll be good news and I get to pretend I’m healthy for a few more months or maybe years. Or it’ll be bad news and I’ll have to figure out what kind of treatment will work this time. And I’ll do whatever they need me to do. "I'm afraid the news is not good, Carissa." I've been there before.

I’ll get selfish. I'll start walking 5 km a day again, drink green juice every day, without fail. Cut out every glass of wine, even for toasts. I'll stop eating soy and meat and sugar and caffeine and dairy - even that little bit of goat milk I’ve reduced myself to once a day in my tea. See, most of these things have dropped down to nun-like levels already, but I’ll do more. I know how to abstain.

I’m not tired, though. I’m always ready to fight. I’m like a retired ninja who still practices quietly at night when everyone else is asleep. I'll be surprised one day by an enemy I hoped might be dead, but in my heart, I knew this day might come. I'll know how to kill him.

That blue-eyed girl

Years ago, before I had kids and before social media and memes of sad Kanye doing stuff found their way into my heart, I remember seeing a story about a woman on death’s door who recorded a series of advice-laden videos for her young daughter. I could never actually bring myself to watch any of them, because, well, death and such, but the story has stuck with me for almost two decades.

Being diagnosed with metastatic cancer when you have daughters creates its own special kind of

panic. I’m not saying it’s worse than contemplating the idea of leaving parents, a spouse or a son behind, there’s just a different urgency to life when a dyed in the wool feminist brings up two new recruits and figures she should be around to introduce them to Angela Davis, Susie Bright and Kathleen Hanna.

I should preclude this precious daughter talk with the admission that I’m an impatient mom. I nag and yell and focus too much on the goal sometimes instead of the process. I’m a proponent of early bedtimes, prioritizing my no-good boyfriend and making them walk to school. I sometimes feel like I’m emulating a fictional farm mother who disciplines as hard as she loves, but alas, there are no goats or slapping screen doors in my life.

I work at being kinder, less yelly and more present in my daughters’ lives, but it only works 60% of the time as I continue to struggle with my identity as a mother. I’m not comfortable with all the over-attentive schmoop and general “well, I never!” that sometimes goes hand-in-hand with motherhood. I’m not letting my daughters watch Last Tango in Paris, but I’m also not down with all the pearl clutching over bad words and Miley Cyrus.  It’s not that I want to be Courtney Love, it’s just that I don’t want to be Elise Keaton.

What’s fer sure is that I love my girls with the fierceness of an Italian momma and the side-eye of an Irish washerwoman. I am what I am and I’m trying to be a decent version of that.

My 10-year old, Stella, is getting to an age where she’s pushing boundaries in a different way. She still needs me, but instead of wanting every scrape or sleep disturbance tended to, she wants to find out what music I listened to as a teenager, whether I think mixing patterns is boss, and what the fuck is going on with her body, like every single day.

Unlike my little troll-like self at 10, she’s a beauty, which terrifies me, because it means I have to go around to the boys in her school telling them she has a Manitou growing on her back so they can tuck their pervy eyes back in their heads. 

A girl needs years of feeling gross so she can come out of the tweens with a sense of humour and a self-reliance that only comes from having to watch Love Boat with your parents on endless Saturday nights.

Stella is well on her way to plowing through life to teenageland, but I am not done with this girl. I have years of explaining why Nickelback exists; what to do when a boy you love cares more about memorizing the dance moves to Lucky Star than imagining you naked; why it’s infinitely more badass to be fight rather than flight but how to pick your brawls with a fast acne-to-weight-to-knuckle size formula I learned while walking along the mean streets of the Victoria waterfront at 2 am.

I watched a movie last night, One Day, that hit me in the gut like only a half-baked screenplay with Paris as one of the backdrops can. It pretty much destroyed my love of the book, but after a 40-something’d up Anne Hathaway was squished by a lorry in London and I got over my initial feeling of triumph over never having to see her little squirrely face again, I realized once again that life is fleeting for everyone and I’ve been shutting off the side of myself that needs to get out of this cranky workaday mother trap and leave a proper legacy for my girls.

This isn’t about planning a set of clever vids with makeup instructions or a collage of supportive mother-daughter images on poster board to show how convinced I am of my own importance. 

It’s doing more of what they love: singing Taylor Swift at the top o’ my lungs, laughing at Frances’s take-no-prisoners cancer jokes, letting Stella pick out my clothes when I travel, talking like a Valley Girl at dinner, bringing them Peppermint tea while they watch dog videos, reading one more page of a book when it’s already super late, going in for an extra, extra long back scratch, and rushing back for just one more kiss before the light goes out.

Can't fight the seether

I have a pinhead amount of tolerance for the alarmist, click-bait, downright Onion-like nature of the pop culture cancer dialogue. And believe me, some of my cancer cousins are the worst at perpetuating this mythical garbage. I have politely and swiftly removed myself from many a group or conversation that dipped into “eating this one food could give you/cure your cancer” territory.

We’re all waiting for someone to tell us that there’s an easy answer to why we got dealt this garbage hand and a magic solution to make it all go away. If you’re not a smoker and didn't work in an asbestos factory in the 1970s, it’s a big fat mystery why your body was invaded by terrorists.

Looking to the oncology community for answers is like asking Netflix why it's recommending Face/Off. Both can walk you through the official Nic Cage algorithms that brought you to this terrible place, but in the end, neither really knows why this specific thing happened to you. And even if we could cut ourselves and our cancerous family members open and lay our cells out on a paper towel for a miniscule matching game, the biology you were born with tells only part of the story. There are epigenetic studies showing that we can actually change our genes over time through exercise, better nutrition and even meditation. 

I don’t think doing any one of these things really well can prevent an occurrence or reoccurrence, but I do know that doing just one of these things really well is not an indication that you’re really taking care of business. We all know the story of the salad eater or marathon runner who gets slapped upside the head with a cancer diagnosis. Like Meryl will tell you, it’s complicated.

I’ve been back at work for three months now and have been feeling strong like a bullfighter during the day, but the persistent itch on my neck bugs the shit out of me, I’m falling asleep on the couch at 9 pm lately, and the other day, I had a dizzy spell in Target that for once wasn't brought about by all the polyester and Snickers bars around me. So even though my latest ultrasound and heart test results literally spit out a picture of a teenager and I’m fairly nailing the exercise and nutrition part, I've decided to stop relying on the regular antibody infusions as my only third-party intervention strategy. I'm dipping into the holistic well once again.

Last week I went to see a naturopath – the same one I stole an expensive breast cancer book from four years ago and never returned. She didn't mention the theft but said she might have a homeopathic remedy for my itch, determined I was likely anemic from my Marilyn Manson-like appearance, and said I was avoiding spirituality like a big atheist baby and it was keeping me from feeling like a whole person. All good advice to cram into 45 minutes.

Dr. S gave me special, lovely-tasting oral drops in four little vials and told me to get my iron properly checked at my next cancer clinic visit.

I was skeptical about the drops, like I'm skeptical about all things granola. They’re for liver detoxification, which sounds like a Gwyneth Paltrow punchline, but I was willing to try. I do believe in the power of full body healing, and shit if I don't have anything left to lose.

Since then, the drops have helped the itch. No joke. After more than six months and hundreds of dollars of creams and prescriptions later, the unicorn tears harvested by third world babies in utero actually work.

I was feeling pretty confident and very LA-celeb like when I walked into my last appointment at the cancer clinic, ready to say in my nasally voice, “well, my naturopath says…”, so I got bossy and asked for an extra iron test beyond the regular hemoglobin count. I also admitted to the drops and how they were helping. This may seem like no big deal, but when you ask for extra bloodwork at the cancer clinic and talk about naturopathy, it’s like telling your hairdresser that you coloured your hair out of a box and it was pretty great. They shower you with disdain at first, question your sanity and then act nice only to humour you.

Sure enough, I got my lab results back today, and I’m anemic. I need to do a test to see if it’s worse than anemia (when you're metastatic, every ailment is cancer - Woody Allen would be happy in this world), but for now, I’m on over-the-counter iron pills that I’m expecting to wreak havoc on my system.

If they’re terrible, I’ll get all high maintenance on myself, speed dial my naturopath for more eye of newt while I stroke my lap dog and scream at my assistant.

If they’re not, I’ll chalk it up to the fact that I really am half lion, half woman.

All this truth seeking reminds me to keep the dream of the 90s alive, when I had a middle part and was pushing against everything.

I need to channel my inner Veruca Salt, band and Wonka chocolate eater, and summon the seether when something feels off, advocate for myself, and continue to politely drop-kick the people who tell me I got got cancer because of the bologna I ate 35 years ago.

The pause

There are things a girls gets asked in her second life that seem not-so-horrifying as they did when she was a sweet-smelling first-time cancer lily.

Back when I was all shy and nervous about leaving the protective arms of the Agency (like the Beygency, but fewer wind machines), I had one of my last appointments with Dr. A and she wondered if I was interested in becoming post-menopausal. Like ending my post-nasal drip or emerging from post-partum depression. At the time, I felt a bit post-traumatic stress disorder and just wanted my always-on-time German train of a cycle back in my arms. I already felt so stripped of anything soft and girly that this was one more thing the Agency was trying to take away in their scorched earth policy.

There were trials! she said.

Estrogen is the enemy! she said.

It'll strip your bones of calcium and sap your sex drive, but it'll be one more weapon in your arsenal! she said.

Thanks for the offer, but no. I'll risk it.

I leapt through my life for the next three years, blissfully aligning my body with the moon and avoiding the phytoestrogens in soy and flax. I kept an eye on the research and laughed occasionally at the idea that I could have been saddled with a monthly shot and daily pills to keep the estrogen monster away.

Last September, as the Agency was once again preparing to loosen it's grip on my life and I was still reeling from having to dance amongst the sickos every three weeks for the foreseeable future, donning my very best "I'm not sick like you" face in the chemo hallway, Dr. A made the offer again.

Um, do you see estrogen is the enemy now, at least for you? she said.

Yes. Yes I do.

I still went away to think about it, staring lovingly at my stash of OB and imagining how I'd dress a dowager's hump.

I'll do it.

So in October, I had my first shot of Zoladex. This is how big the needle is that shoots a little pellet into my stomach every four weeks (Zoladex is on the left, a regular old needle on the right):

It feels like a garden tool going into my fatty middle bits. For the first two months I had a nurse from the Agency do it, so I benefited from a few years of experience.

After that, my Czech GP with the failing eyesight had to do it. The fact that she's Czech means nothing, other than the heavy accent, coupled with the hilarity of her peevish and laborious reading of the instructions and constant apologies that "this is a big needle, I'm sorry", makes it that much more surreal.

Because I am a cyborg built by two different scientists (the drunk one got to build the upper half of my body), it took a few months for the enforced menopause to kick in. My little alien parts put up a very good fight, but alas, lost to more modern science by the time December rolled around.

So now I'm on a little daily pill, just like the old, wild days of birth control madness, and I am officially without the power of baby-making.

I'm less sad about this than I thought I would be. In October, I went through a fair amount of days when I imagined myself transforming quickly into something more like this:

Than this:

I teared up on the regular about the possibility that Pete could soon be living with an emotional eunuch. Marriage contract in breach.

It hasn't been nearly as awful. And with this new high-intensity/low-intensity program I've now been doing for a week (so I'm obvs already in great shape and it's taken hold forever), I hope I'm tricking my muscles and bones into thinking I'm actually 26 and virile as shit.

Truthfully, I like old broads and there's nothing more I want in this world than to be a bona fide old lady in my 80s one day. 

From now on, I've decided to imagine my GP is DDL in the Unbearable Lightness of Being, with his giant forehead and perfectly studied Czech accent, demanding I take off my clothes.

 

The Dude abides

I woke up from the dream of 2014 and felt grateful.

Come December 31, I wasn't bitter or regretful. I could only think about Sharon, Ashlyn and Mary Anne and how their families would do anything for one more New Years Eve.

Last year I walked 589 kms (the distance between Vancouver and Canmore), logged my first ever summer with both my kids, immersed in ordinary fun, the cancer clinic and boredom, reconnected with a good friend I hadn't seen in almost 10 years, finally saw the pink street lamps of Venezia with my boyfriend, watched my kids truly enjoy food for the first time ever in the unbelievable Tuscan countryside, and hung out with my entire messed up and beautiful family over Christmas. Lucky me.

That shitty, rainy day in February when I had to hear "I'm sorry, it's cancer" yet again, the weekly treatments, the scans, the waiting, the stress, the endless needles, the lead legs, the steroid-infused wakeful nights, disappearing eyelashes, rashes, induced menopause, countless meds. It's all meaningless.

When I get asked about what drugs I'm taking now, where I am in my treatment, what the side effects are of my current infusions, the truth is, I can't remember. I've learned a very handy compartmentalizing trick over the past four years. I feel it all for a moment, absorb every last detail of the thing that's about to happen to my body, mourn whatever ills I have to prepare to feel, and then like Elsa, I let it go.

It means I sound absent-minded or uninterested in my disease, and it's all true.

It's impossible to move on unless I let go of the daily reminders that I'll never be free of CANCER. I can't enjoy a new Beyonce video if I have to kill the boner and remind myself that it's all drivel because of CANCER. I'll never watch another episode of Scandal, sleep in, get frustrated with Stella because she's lagging, or annoyed with Frances because she's whining, get excited about ordering something from Sephora, laugh over decades-old Seinfeld bloopers or get my mind blown by the latest trailer for Mad Max if I'm always trying to have meaningful CANCER moments.

I do the soul work. I examine my intentions. I watch my children reading and bawl like an idiot. I have moments, bitches. But it's exhausting to live that way. And I'm done being exhausted.

I have high hopes for 2015. Two days ago I asked "the Dude" to send me a sign that I should get back to writing in my personal time, and gave her 48 hours. I guess this post means the Dude abides. Or lacking any other belief system, I'll take it that way.

The new year smells as fresh as a baby's bum (which is a lie, btw, because baby bums are rank), not because I enjoy self-flagellation, but because I get off on reinvention. I blame it on 1983, when I went into my bathroom and emerged looking like a Lolita-ized version of this:

Instead of being all mini-van mom horrified, my Ma made enough sounds of approval to make me think reinvention was the shit. Her approval ended the day I emerged from the bathroom six years later, donning her rosary beads and a garter belt worn outside my pinstripe suit pants, but the shock only reinforced my determination to be slutty and wonderful for many more years to come.

I don't wear bustiers any more (do my daughters even know what bustiers are?!), but I'm still kinda slutty. Beginning Monday I'm doing this four-month program to get and look fit in ways I've never been. I have to post pics of my mid-section on Instagram every month, which horrifies me, but I'll do it for the love of science. I've never had a six-pack, and 42 seems a good year to try.

So here's to a happy new year, happy new life, happy forever forgetting that, oh yeah, I have CANCER.

Outta dodge

I got some incredibly surprising news last night that brought me to the edge of undeserving.

Rewind to one week ago and I was marching into the breast imaging department at Vic Gen, feeling a bit cocky ahead of my ultrasound. My PET had revealed a suspicious area under my right arm and Dr. A has felt a thickening there all along.

I was cocky not because I thought it was nothing, but because I've gotten so good at self-talk that I had convinced myself, and everyone around me, that even if the ultrasound showed something and I had the area biopsied, that I was staying the course of my "watch & see" approach and would fight to keep that suspicious piece of shit so small it would never amount to anything in this life.

My nurse that day was lovely - motherly and funny and determined to make me feel comfortable in that room with a billion stories. I was immediately thrown back to 2010 when I had my first ultrasound and the tech kept going over and over the same area before calling a radiologist in to do a core biopsy and fine needle aspiration on the spot. I was all but shoved out of the room when it was over, with my shopping basket of clothes, reeling from the new experience.

When this one got going, it was relatively quick. Some back and forth, then a joke about taking an image of my implant, just to prove she felt me up in the right places. My nurse disappeared at this point to show the images to the Wizard of Radiologists, hidden in a back room somewhere, and I felt good.

As I lay on my left side, a rough towel thrown over me, the ultrasound jelly still on my skin and the nurse not back in the time I would expect her to be if it was really nothing, I started to fall apart.

I craned my neck around to study the images she had left on the screen, and sure enough, there was a long black oval, taunting me. Just when you thought you were out, McCart...

By the time the nurse came back in, I could tell she had someone with her and my tears fairly gushed out.

The fucking radiologist.

"We saw something, Mrs. McCart..." and then blah, blah, blah until I was crying quietly while she numbed my armpit, asked for a "spinal-sized needle" and proceeded to perform the very strange and fairly painful aspiration.

My nurse held tight to my hand the whole time and I held tight back. I didn't once look at the fucking radiologist. I didn't want to remember her stupid face or engage with her. She would not exist.

"We got a good sample, Mrs. McCart."

When it was over, the nurse hugged me, brought me a cup of tea and let me hang out on the bed until I calmed down. That made it all worse.

Six months of stress bit me hard in the ass all at once and my mind went right to dwelling on the asshole nature of metastatic cancer. The cells are different when they spread beyond the original site. They're more aggressive. They don't respond as easily to treatment. They'll screw your husband and steal your promotion, all with perfect hair and white teeth.

I knew that if the Taxol hadn't been able to eliminate this famous spot, then there wasn't much hope of eliminating it with anything else, and I knew I couldn't take more Taxol. There was just pure luck and me now, doing my best to keep it from growing.

"There are a lot of tears in this room," the nurse said. That was all I needed to hear to remind me I wasn't going to be like all those other bloody stories.

By the time I got home, I was zen again. I was determined to file this one away and do exactly what I've been doing, only more. I was hell-bent on not letting this become some depressing chapter in my fight. I got on with life.

Then last night around 7:30 pm, Dr. A called me at home and blew my mind.

"The biopsy was negative."

I think I made her say it a few times, and I asked a shit ton of questions about what else it could be (maybe an overactive lymph node, maybe fighting off an infection, maybe a shitty biopsy sample).

"I'd take it as very good news, Mrs. McCart."

Swoosh... Just like that, I'd won the lottery again. I get to start again. Like, really start again. And it kicks off with a trip to the home country...

Since I was knee-high to a grasshopper, I've loved travelling.

From anticipation to sorting through post-vacation photos, it's all 2-year old giddiness to me and this trip to Italy slapping us all across the face next Friday has dug itself even deeper into my psyche.

When I was rediagnosed, we had to cancel a big family vacation and I've been grappling with the fact that unlike J.Lo, my ass is no longer insurable. Cancel for any reason and I'm fucked.

And like any 2-year old who sees a cookie beyond her bowl of veggie mush, I could only think of the one thing I couldn't have for a very long time. No travel made me feel housebound, Islandbound, stuck. I hated it.

Then my work family, like any amazing family, decided to do something about that and gave me back the incredible gift of anticipation.

Over the past several months, beyond the scans and consults and chemo and endless needles, I've had this unreal joy of planning a trip. It was ridiculous, actually, to be looking ahead to a time of complete mystery to take my family far away. It's not what I'm inclined to do, but it grounded me in something completely outside of the shit of cancer and I'll never be able to tell you what that has meant to my motivation for getting the bad cells gone.

So we're making like my brilliant cancer cells and getting the fuck out of dodge.

A presto, i miei amici. Mi bere vino e mangiare formaggio in tutte le vostre onore!

The marriage

After the high of the PET scan results, I got another two great pieces of news that will ultimately lead me toward the next stage of my life: no radiation, no surgery.

Radiation was nixed because the PET scan results were so good and because if I radiated anyway, I could end up with a broken rib or a host of other nasty complications.

Surgery was nixed because the PET scan results were so good and because there's nothing left to resect.

I came into this whole dealio thinking I was a sure candidate for both of those steps, so to be removed from the list makes me feel like I lost the lead in a really bad play. I'm a bit miffed I wasn't selected, but the whole experience would have been a shitty one, so ultimately yay for me.

There's still the game of "what's under my armpit?" to play, so I get an ultrasound on Thursday that may or may not lead to a biopsy during the same visit. If the biopsy happens and there are cancerous cells behind door number three, the options are not cut and dry.

For once, Dr. A wants to be less aggressive.

She recommended that if it's cancer, she would prefer I take a "wait and see" approach rather than blast it with radiation or cut it out. Radiation leads me back to those nasty complications and surgery could leave me with two arms that have compromised lymph systems. It's been bad enough babying my left arm for the past four years, but an infection that nearly ended me in 2013 is a story I don't want to repeat.

I agreed with Dr. A on waiting things out, so no matter how the ultrasound on Thursday turns out, I'm moving into maintenance mode, or a marriage for life with il cancro.

Three years ago, when I came back to work after beating the c-word the first time, the question I heard the most was "did your doctor give you a clean bill of health?" At the time, I was a bit put off by the question. I was released from the care of the Agency after getting "clean margins" from my mastectomy, but there was never a conversation about the cancer being absolutely gone. I felt like a bit of a fraud, but I played the game for simplicity's sake.

"Yep, clean bill!" I would exclaim, because I'm not a social idiot or a debbie downer and most of these conversations were on the way to the bathroom or during a 60-second chat as I passed a cubicle.

Everyone wants a happy ending and beating cancer is undoubtedly inspirational. The real complexity of having it is hard to describe quickly and doesn't really fit on a poster.

Since then, a handful of friends have passed away from cancer far too soon, every one of them getting something like a clean bill of health from their doc at some point - either that exact phrase or something more medical-speak like "complete pathological response". Whatever they heard, I'm sure every one of them did the jig like I did after my PET scan, because it's fucking good news, and you thirst for that shit when you're going through treatment.

The truth is, once you get cancer, it's more like a rocky marriage than a bad boyfriend you kick out after you can't take it anymore. And that's hard to adjust to. I will have to manage this asshole for the rest of my life, like it or not. I still have more or less the same body, and whatever led those cancer cells to take over in the first place is still there. I can try to push them off as long as possible through a great diet, regular exercise and consistent meditation practice, but it will never go away completely.

This isn't sexy or inspirational. And I promise not to be depressing when you talk to me about this stuff as I roam the world again. Because I feel anything but depressed or defeated. I am over-the-moon about coming to the end of a giant hill, and there's really nothing that can push me off that high.

So I will continue to have Herceptin and Pertuzumab pumped into my veins every three weeks. I will likely go on some kind of brutal medicine to put me into early menopause and keep the estrogen at bay. I will continue to have scans at regular intervals to see if those asshole cells are still, after all the warnings, leaving their socks all over the bedroom floor again. But I'll also continue to be so badass, my cancer husband will have no choice but to be quiet and meek and so very regretful of the day he thought he could disrespect me twice.

It helps immensely having a real husband who is nothing like my cancer husband and has gone the distance with me over the past 12 years. He loves my wretched self despite everything I've put him through in the better or worse category.

"In that book which is my memory, on the first page of the chapter that is the day when I first met you, appear the words, 'Here begins a new life'." - Dante