Freak flag

I've finally decided to accept my damaged body and let my freak flag fly.

When I had my first breast surgery back in 2011, it was wrenching trying to figure out whether to lop just one or both globes off. I asked everyone I knew who had gone through the surgery and got a lot of the same hippie talk you get when you kvetch about love in your teens. "You'll know what's right" or "trust your instincts" or, even better, "think of yourself five years after the surgery, not five minutes".

Actually, that last one was mine. I trotted it out to a friend who was going through the surgery just after me and I had all the wisdom of a newborn foal.

The truth is, it's a fucking wretched decision to make, and yes, it's never as traumatic as you think it's going to be in the short term, but the long game can be a bitch on your psyche.

I got both done, for the record, and woke up from the massive surgery with little expanders inside me, so never had to go through the experience of being completely decimated in the chestal area.

One more surgery and several painful saline injections later, I had a new set that were not Hollywood-ready, but were smaller and unmoving and required a whole new wardrobe and state of mind after years of being G-size and unwieldy. People looked me in the eye. I could wear blazers. Construction workers lost interest. Girls didn't tsk at me as much anymore.

When I was fully used to walking around as a small-titted gal, I got a nasty strep infection that settled on an implant and yada, yada, yada, I had to get the left one removed permanently.

I woke up from that surgery finally understanding the sting of being lopsided and it blew. Since then, I've kept the space warm with a chicken cutlet and a rotating couple of special bras that together are worth more than my car, and I've rarely gone out, especially swimming or in anything tight, without the comfort of balance.

When you're on the cancer-go-round, it's a gigantic respite not to have to also present as damaged to every person who glances at your tight sweater and sees something amiss. But lately, the deceptively cute but crazed little 6-year old Id who lives in my house, aka Frances, has been noticing life in general more and in her mean girl ways, making comments about how embarrassing it would be if someone saw me naked with my missing boob.

"Can you imagine?" she says. "I would die."

At first, I was inspired to tease her relentlessly for being so sensitive to what other people think, but now I realize I wasn't being imaginative enough. I must mortify her to teach her a lesson and stop myself once and for all from living in my two-titted bubble world of fakery.

When I started my big walks several weeks ago I wore my beloved cutlet in my sports bra and somewhere around kilometre three it ended up migrating to the middle of my chest for the rest of the walk. So I made the decision to leave the cutlet in the drawer on most days, emerging from my house braless, lopsided and as superfreaky as I am.

I do get a few looks. But I care not. I may burn that cutlet in a barrel one day and then quote Andrea Dworkin for a solid week.

Frances will be scarred forever, of course, especially after I take them swimming this summer and change back into my clothes in front of the world. But if she's ever horribly damaged by life, I hope she feels woman enough to let her freak flag fly, too.

Fight the power

Here's the difference between holistic and traditional in a nutshell... If you have indigestion, the holistic approach says "try x, x, and x and use the method that works for you." The traditional approach says "take this drug."

I know: duh. But it's amusing how self-indulgent traditional medicine is. Pound your symptoms with a hammer until the side effects or the ineffectiveness of the drugs bring you back in here and take zero responsibility for your own health. It's lulling, actually. Take care of me. Solve this. Tell me I play no role in this. Let me continue to do exactly what I've been doing but fix me. It's paternal. And maddening.

Every three weeks I'm obligated to visit a nurse and an oncologist so they can tick some boxes and give me the green light for the next cycle. On the one hand, they're worried I have the movie-size foreshadowings of a cough or shortness of breath, but when I tell them I'm managing, except for the indigestion, heartburn and general bloaty bad guts, they pounce on that like a bad boyfriend who just wants you to shut up about your bloody day already.

"LET ME WRITE YOU A PRESCRIPTION!!" they shout at me, but I tell them I'm trying to eat smaller portions, eat lots of fibre, less food, more frequently, take apple cider vinegar before meals, a probiotic after and I'm suddenly speaking a language they're neither familiar with nor interested in.

The only reason I have these homemade solutions to throw in their faces is because I'm ignoring Google like a good girl and went to see a nutritionist at Inspire Health last Friday. It was glorious. I had kept a food diary for a week, so managed to forgo cravings for Doritos or Texas carnivals selling deep fried butter for fear I'd have to include it on the list. On paper, my diet looked wonderfully varied and followed the 80/20 rule of eating clean/whole foods 80% of the time and doing whatever the fuck I wanted (save deep fried butter) the other 20%. I mapped my bowels, my exercise, my times of relaxation, and my liquid intake, including the 16 oz of green juice every week day. Ding, ding ding!

But the smugness was momentary and the glory wasn't really in the "you're doing very well" tut tuts of the nutritionist. It was in the tips and oh-so-rational recommendations she gave me for everything I was wondering about, including where to get grass-fed beef that didn't require a full tank of gas (Village Butcher, Oak Bay Avenue).

She solved my internal debate of butter vs. Earth Balance (butter won, but get grass-fed, like the brand below, which doesn't actually say it but is):

Probiotic vs. yogurt to increase my good gut flora (probiotic won because it causes less congestion, inflammation and general stomach upset than dairy). She said this Udo's brand was excellent, so I bought it:

And which eggs to buy, because it's getting ridonculous out there (free-range so the chickens eat grass and bugs and other normal chicken things, and organic so they don't ingest pesticides):

She also recommended dealing with my heartburn, which is a result of too little acid, not too much (I'm clearly an idiot for not knowing that) by adding a teaspoon of raw apple cider vinegar into a 1/4 cup of water and drinking it before dinner. Unpasteurized is essential here, and this one is a good, trusted brand I already have. PS - apple cider has a shitload of other health benefits and uses. Look here:

On the subject of oils, I was almost there and she confirmed a few things for me: extra-virgin olive oil for salads or low-heat cooking. Coconut oil for high heat cooking. Moderate amounts of organic butter for flavour, etc.

It's important that the butter is grass-fed and organic because in cows (even though in Canada we don't feed dairy cows growth hormones) any antibiotic use and stress hormones from living a shitty factory life settles in the fatty parts, which includes milk ducts. If the cows are happy and grass-fed, your butter is happy and your cells are less inflamed and able to fight off illness.

Try to steer clear of Soybean (in many processed foods), Corn, Sunflower and Grapeseed oils when you can. They're full of Omega-6 fats instead of Omega-3 fats, and we get such a disproportionate amount of 6 in our Western diet today that many docs believe the tipped ratio is the biggest culprit of modern diseases.

I've learned or relearned a shitload of other things, but the conversation I was most interested in was the one about soy. Despite the use of soy in many Asian diets, the role that it plays in cancer is still relatively unproven. For now, the experts say that eating fermented soy, or soy that's as closest to the bean in form is best, and even beneficial. The phytoestrogens in soy take up the spaces on cells that would otherwise go to estrogen, thus blocking estrogen's effects and mimicking drugs like Tamoxifen. This is a good thing for estrogen-receptive cancer like mine. But the studies are not terribly conclusive or agreed upon and are often based on subjects that began consuming large amounts of soy from adolescence, so I'll continue to stay away from soy milk and fake meats but enjoy miso in moderation.

After an unadvised getaway with Pete this past weekend that left me fighting a cold (do NOT say I told you so), I saw my regular onc again today to get my pre-cycle three check in. She was very impressed with the effect the chemo was having on my chest rash (pretty much gone) and my collar bone node (almost unpalpable), but when I told her I had indigestion and heartburn and was doing a bunch of things to try to control it myself she said, "I CAN WRITE YOU A PRESCRIPTION!"

Passing

When I go on my morning walks, I climb the hill that leads to the Uplands, the tony area of Victoria where the houses look like French chateaus:

and even the medians are baptized with proper names:

I grew up in an area that's the opposite of the Uplands and spent my youth both hating and coveting the Oak Bay hair (so luxurious!), shoulder sweaters and tabbouleh parties. Living on the edge of this mythical place now, I sometimes cavort with women my age who had the bizarro version of my younger life and they lean in for the tales of bush parties, girl fights and growing up to the sounds of dirt bikes and stock car races on the wind.

I'm no more Oak Bay today than I was at 15, but when I walk through the English streets like Midland, Ripon and Exeter, saying hello to the landscapers, renovation teams and a smattering of retired men biking or running like 30-year olds, I feel like I'm passing as a local and I'm embarrassed to say it is good.

Because I still have my hair, pink as it may be, I'm passing all over the damn place. I have a respite from being seen by strangers as sick. If I wear my prosthetic breast, I'm bloody well near normal. That makes everyone else comfortable and it helps me forget for a few moments every day.

I get enough reminders. The "Ca Breast" scrawled on my weekly blood req. The halt to my digestive system for several days after chemo. When I think about saving for retirement or needing to see Stella through the idiocy of middle school. Or when I fall back on my old ways of getting frustrated with my kids when they're schmoopy or lazy. It's been difficult reframing my life and my thoughts again to become even more mindful and present, this time with the knowledge that I'm metastatic and the medical profession sees that as an eventuality. 

The day before chemo is hardest. I feel great. Everything works. I can slip into denial. I don't read my cancer books on these days. I surround myself with celebrity gossip, cookbooks or life hack articles to pretend I'm just a normal girl figuring out normal problems with no sense of urgency about anything.

Today, though, I'm thinking about my list of exotic travel destinations, like the Giraffe Manor in Kenya:

I'm done worrying about wracking up debt over the things I want to do. I'll leave those problems for the next wife, who, let's face it, could very likely be one of those Greyhound-slurping real housewives I sometimes spy through the windows just over the border.

A proper send-off

The hair continues to fall out strand by strand, so on Saturday night I decided to finally give it part one of a three-part send-off, with my boyfriend's hot love and emotion in the form of plastic gloves.

And the colour turned out glorious.

With a little side-sweeping and careful angles, you can't even spy all the bright pink scalp and forehead action.

When I went into the chemo room yesterday to get my first real poke from scratch through my friendly neighbourhood port, the nurses (even bitch-face redhead) went wild for the hair, but I think it's mostly because they go wild for any hair after endless days and weeks of bald. I'll be sorry to eventually disappoint them.

The port has healed like a motherfucker. One week in and the scar needs its own star on the walk of fame. The catheter only barely peeks through the skin leading up over my collar bone and into my jug-u-tastic vein. Dr. M is my new girlcrush.

I'm missing my work peeps today as they pull off a show in Vancouver that I started but they'll mos def make better than I ever could. I love you all to bits.

I'm also praying to the goddesses of hips (she'd be a sexy one) that my brilliantly wicked and kind friend Di makes it over the hump of brand new hip surgery so she can get back to her days of nursing injured baby birds back to health, making stiff martinis for her guests and just generally making sure everyone around her enjoys life as much as she does. Love you, girl.

Next up: Is that the buzz of a razor I hear?

Surgical precision

My port surgery on Monday ended up being completely without drama.

The lead up was wretched. I slept about an hour the night before and developed a not-at-all-annoying tappity tap tap tap relationship between my fingers and thighs after I donned the gown and robe and slid under my first of many warm blankets.

I noted the woman next to me had sneaked a book and I hated her instantly, but the curtain between us saved her from my side-eye. The older gent across the way had checked in downstairs at the same time I had and his name was Dennis O'Leary. Every time a nurse pointed out that his name was like the comedian's, he laughed and said, "well, he's a Leary and I'm an O'", with just the right touch of weariness. I was a little in love with him.

The old codger next to me was getting pins put in his fingers after falling several times and his daughter was sitting with him, annoyed her meter was running out as she waited for her dad's surgeon to arrive.

The middle-aged woman across the room complained about being freezing cold so she was loaded up at regular intervals with oven-fresh blankets until a nurse stopped by and said, "Just to let you know, your husband does not want to leave the waiting room until he can come in here and see you're okay before you go in... He shouldn't be in here, but I'll let him in for five minutes, the poor lamb."

I reclined in my bed for about 90 minutes, observing everything and getting more nervous with each tick. A nurse officially admitted me about 20 minutes before my surgery time (no to dentures, no prosthetic legs, no blood pressure or needles to my left side, yes I want a sign that says that and yes to confirming port surgery on the right side). Then a surgical nurse came by to double check my info and tell me she had had ovarian cancer 23 years ago and was still kicking around, so let's do this, sister. 

And then I saw God, aka the anesthesiologist. He had on a balaclava-type head cover and was tall and a bit Baby Huey looking. 

"Hello, Mrs. McCart. I'll be your anesthesiologist and - "

"What will you be giving me as the narcotic? Fentanyl?"

"Well - "

"And for the relaxant? Valium? And the pain reliever, Lidocaine?"

"Just - "

"And what if I feel pain during the procedure? Will I be lucid enough to speak?"

"Are you a health professional?"

"No."

"Ah, so you're one of those dangerous people who know just enough to ask the right questions but not enough to have any idea what's going to happen. Let me look at your chart first so I know exactly who I'm dealing with here before I tell you you're right."

He confirmed the Fentanyl, the Valium and the Lidocaine, and then, perhaps to punish me, told me in great detail what the experience of being awake for a procedure like this could feel like. He used words like "tugging" and "pulling" and "awareness of some pain". 

"You just have to say the word and we'll give you more Lidocaine. We don't want you so far under that you're flopping all over the place and can't communicate with us."

That's when the uncontrollable leg shakes started up. It's also when the nurse came by to take my glasses away as my whole surgical team showed up, sans my actual surgeon.

"Without my glasses any one of you could be Dr. M," I said. Then there were jokes and leg pats and a few "there there"s as my whole body began to vibrate in anticipation.

"We usually take you into the final waiting area before wheeling you into the surgical room, but I think you're anxious enough without being moved somewhere else right now. We'll all stay with you until Dr. M gets here and we'll stare at the green walls and curtains together and talk about how calming it is."

Dr. M showed up just as my heart rate was climbing past 100 and my usually low BP was, for the first time ever, a normal 120 over 80.

This is going to sound completely sexist and ageist, and just plain stupid, but Dr. M has such a lovely young face that when she came close enough for me to see, smell and taste her better, everything melted away for a moment.

"You'll be quite fine," she said after marking her initials on my neck. "You won't remember anything and the pain will be very minimal after." 

After she left and I shrugged off my robe and tucked my hair into a cap to be wheeled into my cold, cold surgical room I was a wreck again.

When I arrived, everyone was so lovely and dinner party-like, introducing themselves to the blind woman with her arse exposed to the universe. Even the students came up and shook my hand while I slid onto the impossibly skinny operating table.

"This is the first surgery I'll be observing!" one of boy interns said excitedly and I was excited FOR him. Just in more of a shut-the-fuck-up-for-a-minute-so-I-can-figure-out-how-I'm-not-going-to-pass-out-from-the-stress kind of excited.

The arm extensions came out from the table and the IV went in my hand with only a little more pain than usual. The toasty blankets finally made it into the room and now only my legs were shaking and my teeth were chattering. All the while I tried to make everyone feel better for putting me in such an awkward situation by making jokes and laughing heartily at theirs. 

"I'm going to give you something to relax now, Carissa." Magic words.

"I feel that, doc. In my head..." And then nothing.

The next thing I remember, I'm being wheeled out of the room and I'm saying, "Did I talk?"

"Yes, you told us once to give you more pain medication, but don't worry, you didn't reveal your PIN or anything."

And just like that, I felt normal again. No pain. No discomfort. No dizziness. No nausea. No memory.

I was monitored for an hour in the first recovery room, but my vitals were normal and my pain was zero, so I moved to recovery room #2. The nurse there was mostly on her own, but she took the time to wipe off some of the red antiseptic from my neck with a warm facecloth and didn't let any of the other patients get away with trying to skip out early. She was a force with a Snow White voice.

After an hour there with still no dizziness or pain, Pete was called and my chariot awaited in the roundabout. I was wheeled down, as per protocol, but I felt miraculous.

Pete made me some divine Chinese noodle concoction for lunch and then I started to feel the Lidocaine dissipate. I took a couple of Tylenol and slept for two hours, grateful my chemo was moved to the day after.

Getting chemo drugs through the port was a dream. The nurses fawned over the surgical precision of Dr. M, my parents were there to make sure no one fucked up on their watch and everything went extremely well, despite having to recline for a solid 5 hours.

But here's the annoying thing about me. Instead of wrapping two days of significant body stress into a warm duvet, recognizing that I felt like I'd been pummeled in the chest and neck and being able to palpate every centimetre of the catheter attached to my port, under my skin as it snaked up and over my collar bone and into my jugular, I wanted to get out of the house before that marathon chemo session. So I did. And my pain in the ass/saviour companion made sure I didn't wimp out.

 

I had to walk with my neck bent down, my arm straight and with a sloth-like pace, but I went 2 km, mofos.

The day after, I felt that tube in my neck even more, but Stella had two dance performances at UVic that morning, up a giant hill and a 20-minute walk from my house. I was an idiot to do it, and I think I may have used up one of my lives on that hill, but I did it. Almost 4 km for the trip, just to see my baby do the splits, the limbo and a wicked flashlight number to Sweet Dreams. There was no way I was missing that.

Port-o-call

I go in for my eighth ever surgical procedure tomorrow, my fifth in the last three years. I'm getting a port-o-cath installed, which was my choice, to save my veins from further wreckage.

I know the drill. I even know the hospital staff by name. But it's not a bus stop I'll ever get used to.

Waiting in a hospital bed in the pre-loading dock for an hour, sometimes two, no smartphone or Lainey Gossip to keep me busy, not even an old Stephen King or Reader's Digest to smirk over. Sleep is not possible. You have to time your bathroom trips so the other cattle don't get suspicious. And you have to tell your story to eight different nurses who are there to verify that you are who you say you are and that you're getting the right surgery that day. Your surgeon even has to mark the right spot with a pen and sign it with their initials to prove that they didn't cut off the wrong arm. Medieval.

Port surgery seems to be 50/50 whether you get it under general or local. I was pleased to get a surgeon, Dr. M, who only does locals and I was extra pleased when she turned out to be a woman about my age, telling me at the consultation, "you don't wanna get more nasty stuff pumped through your veins than you need to". But now I'm anxious about seeing and feeling everything in that room, on that cold operating table.

I had a check-in with another oncologist last Friday, and she seemed to think that beside the local, they'd also give me fentanyl, with is a nifty narcotic I got both times I gave birth. In the throes of labour it didn't exactly eliminate pain, but it put me into a slammin' heroin buzz between contractions, which was enough at the time. The idea for this surgery is that they don't want me watching all the hubbub and then giving them a poor rating on Yelp, so the fentanyl will put me into a lovely altered state. As long as I don't feel them messing with my jugular, I think I'll be okay.

I'm expected to get chemo tomorrow, too - the full three drug cocktail - but I finally got cold feet about this overkill of a day on Friday and asked the onc, "what would you do?" She said "move it". So we're trying.

I've been an asshole today to everyone around me, so I'd like to get this less-than-idyllic stop over with before our house becomes known as "the one where that woman yells a lot".

The long tail

I had a dark moment on Tuesday, but I've now accepted Carissa as my personal saviour.

And this is the thing about cancer. You can be motivated by the challenge or defeated by the dire faces on any given day, but after all the inspirational messages float past your eyes for the millionth time like so much fluff, it's really just up to you. It's not so much courage as just getting on with things.

After I rolled the metastatic word around a bit on Tuesday, I did two things: sign up for a 90-minute consultation with an integrative doc at Inspire Health and begin reading Anticancer by French doc David Servan-Schreiber. I don't take on new cancer tomes easily after all the reading I've plugged into my brain over the past four years, but this one came highly recommended as something as close to a bible for the team at Inspire Health.

The doctor visit started with a hug, which was so very human. I told her everything about my health since 2010 and talked about my life and fears and hang-ups.

She acknowledged the things I was grand-slamming, like juicing, meditating, walking, going plant-based, taking 2,000 IUs of Vitamin D every day.

Then she suggested ways to bring everything to the next level, like eating some nuts with my juice to ensure the fat soluble vitamins were absorbed, meditating on some forgiveness for my GP's laziness and my self-flagellation over not being able to prevent a recurrence, making my walks a no excuses daily ritual and dabbling in everything else, not getting bound up on which supplements might be beneficial, but  focusing on getting enough whole foods instead.

We talked about my family and really getting joy out of being together, whether it's sharing the badass meditation pillow Pete bought me this week:

Or just generally taking a moment where I can:

We also talked about not being afraid to get some high-quality grass-fed red meat into my life every once in a while. Grass-fed isn't just natural, it means high in omega-3s, which heal rather than promote inflammation, and it contains CLA, a boffo fatty acid that has been shown to reduce the risk of cancer and other chronic ailments like diabetes.

Despite living in the land of locavores, it's not easy finding grass-fed beef. The nearest organic butcher told me today their beef is hormone-free and partially grass-fed, but grain-finished. My lovely little grocery store down the road, which packs a shitload of local goodness into its tiny aisles also has hormone-free, ethically raised beef, but it's not grass-fed.

I don't actually miss beef much, but I'm trying to find a way of eating that is plant-based but also includes everything magical, like unicorn meat, which I'd gladly try if I knew it attacked cancer cells (or at least tasted half-decent on a bun).

I came away from the appointment with a second hug and something great for my back pocket. I told the doc I'd had a bit of a panic attack at seeing the metastatic word and she said, "As doctors we're always so concerned not to give our patients false hope, but there's also such a thing as false hopelessness. Don't get caught up in our words and statistics. This is about you and only you, the rest is so much noise."

I was already moving past it all and feeling lighter.

I began reading Anticancer yesterday and I'm already hooked. The doc who wrote the book is no longer alive, but when he was diagnosed with a brain tumour at 31, his prognosis was bleak, with the median survival rate, with treatment, at less than one year. He died almost 20 years after this diagnosis and in the meantime, became one of the godfathers of integrative cancer care in the world.

He talks about seeing yourself as part of the long tail of statistics. There's always a median, with one side encompassing the group of people who die earlier and the other with the group of people who die years and years later as part of the long tail of the trend, sometimes succumbing to something other than their original cancer.

I woke up this morning feeling like the long tail, which is slightly less sexy than it sounds but no less powerful. I can do this. In fact, I can do this with style, motherfuckers. Just you wait.