Tuesday, April 29, 2014

Metastatic

I Google very lightly when it comes to cancer. It's a rat hole like no other and can make a grown-ass woman cry when she's trying so hard to live on the surface of this disease and stay optimistic so she can still make lunches and pay taxes.

The truth is, I get enough dire information from the real doctors in my life, sometimes when I'm looking the other way.

I got my practitioners assessment form back, which details for my work why I can't be working right now. I skimmed it before putting it in an envelope to mail away. It took a few minutes to percolate and then it destroyed me.

Right there, in doctor-like scrawl, Dr. A had written "metastatic breast cancer". Before you think I'm a complete idiot and not paying attention to my own diagnosis, I know that when the same cancer returns and shows up in lymph nodes outside the original area, technically, it's stage IV, even if there are no organs, bones or brain matter involved. Rationally, I know this. And I know that metastatic means basically the same thing. The rub lies in the fact that I've never attributed these things to me in any official way because I haven't seen it in words. And I needed to get through the first few weeks of this business without someone else's verdict hanging over my head.

And then I did the thing I thought I'd never do: I Googled a little.

My findings? In so many words, "when you have metastatic cancer, it can no longer be cured, only managed to extend your life." So there.

Listen, I'll get to the point where I'm ready to say "fuck you" again and defy the statistics. I'll show this thing who'll live more than just a few more years. I'll put away Dr. A's comment at my full diagnosis appointment in early April about "helping me live several more years" in a rusty file drawer. I'll ignore all the wisdom of centuries of traditional medicine to come to my own conclusions, thank you very much.

But for a moment, I am humbled and scared.

I just finished part three of cycle one and have a two-hour nap under my belt. I'm rested and ready to turn this small stone around my mouth and under my tongue until I'm ready to spit it out.

Sunday, April 27, 2014

Anti-cancer

This coming Tuesday marks part four, round one of Chemomania. So far so tolerable.

The post-injection effects are inconvenient rather than debilitating. Heartburn after every meal and snack, tired in the afternoons, burned out tongue and throat, wretched guts, wretched skin and a touch of chemo brain (forgetting words, names and where children have hidden). A walk in the park, really, compared to what others have to endure or what could happen at any moment in the future. I'll take it.

Is it working? Well, the adorable little cancer rash on my chest is almost completely gone already, which excites and scares the pants off me because wow, I'm only in cycle one, and shit, I'm only in cycle one, what else is going to burn to the ground over the next 5.5 months?

The immediate post-chemo experience has also been pleasantly manageable. During the one-drug weeks, it's 2.5 hours in the chair, then pour me into the car in my Benadryl haze before delivering me unto the couch, greeting various children with a mumble, making a few phone calls and collapsing in a non-sleep coma for an hour before the steroids call me to the feedbag. Last week, my Ma delivered dinner and it was Xanadu on roller skates. I don't think I could have concocted a boiled egg, let alone a meal my kids would eat.

During the the recovery days that follow, I try not to become a hermit. I walk, garden, clean, bake - sometimes a tad out of season, like the late bunny that showed up today - write to friends, see family, knock off various appointments and nap. I'm also immersing myself in the anti-cancer movement all over again.

A few weeks ago I decided to truly rally all the troops in my kingdom and signed up at Inspire Health, a provincial integrative cancer care organization funded by the Ministry of Health but operated on donations. I paid a decent sum of money ($450) and made a commitment to listen to whatever they had to tell me.

Pete signed up, too. He took last week off work to go to chemo with me and attend a 2-day program with Inspire Health that ran the gamut from nutrition, acupuncture, meditation, mindfulness, communication and just generally taking control of your health. I was a bit skeptical going in, but I was mostly game.

There were nine other people in the program, which included sickies and their support people all in various stages of treatment and recovery as well as age and life situation. I tried my best not to stab my eyeballs with the uneven presentation skills and random capitalization on the PowerPoint slides and as a result, opened up and actually absorbed a lot of great stuff over the two days.

Two big epiphanies: don't wait for permission to take control and embrace my dabbling nature.

Since my kids were born I've had this brutal time trying to take time for myself. I travel, I work a lot and the time I have off seems best spent shuttling my kids around or otherwise trying to force family time. Entire weekends, months and years have gone by without taking the time I need to figure out own health. I feed on the guilt and resentment like some kind of badly drawn fiction character. We're done with that now.

On the dabbling side of the equation, when I do take time, I'm all over the place. Biking here, running there, meditating whenever, chocolate cake for breakfast and kale for dessert. But after two days of truly planning out my war path, this is actually feeling okay. As long as I make time to do something every day that prioritizes my health, I'm not fighting the dabbler in me anymore.

The actual skills and information we took away from the program were more specific than that, but it was a new spirit I was after and I got it.

So I'm back on the dedicated anti-cancer train with revitalized shits and giggles. I'm moving beyond focusing on the cure and the cancer cells and into the realm of creating a patented super-Carissa, able to fight off the nastiest of diseases with the swing of my lasso.

Tuesday, April 22, 2014

Eating for two

The world conspires against you when you're trying to eat well on chemo.

When you're feeling vulnerable and trapped in the recliner of death, some asshole is eating stinky soup next to you because his cocktail comes with extra steroids, which means extra hungry. When you're trying to be all diligent and antioxidant, China Green Tips gives you wicked indigestion. I'm somewhere between the two right now, with a smattering of heartburn, loss of appetite in general and energy loss thrown in for good measure.

When you leave round one, the nurses wrap it all up with the bow that is their "concerns" spiel: who to call if your fever goes above 38 C (there's a special medical oncologist on call), what to do if you get the shits (basically rubber sheets and good luck to ya), and what to eat if you're feeling like the inside of a Gravitron. This is a snippet from the actual list for that last one:

  • crumpet
  • potato chips
  • plain cake

I get the starch aspect, but if I needed something to smack me in the face again with "you've got something old people get", the nausea control tips did it for me. Thank you, cancer.

The thing they do get right for the ages is "avoid eating your favourite foods". Even when the chemo doesn't make you nauseous (which it hasn't with me so far), it strips your digestive tract down to the studs, including your tongue. It's hard to describe the feeling, but it's closest to drinking several cups of a scalding beverage for a few days until everything feels raw going in and there's nothing stopping the mildest of lunches from splashing back up. Lovely food eventually tastes like nothing and you get a bit pissed off about it.

I'm trying hard to eat clean and eliminate meat and anything bought, sold or processed from my diet, but with round two scheduled for later today, I know salads, legumes and whole grain anything will soon become my enemies and I'll be reaching for pickles, consomme soup and flavoured water. Because yeah, even the most gloriously filtered artisan water, hand-bottled by the bastard children of Mongolian kings from the frigid lakes of Tibet takes on a tin-like taste that makes you want to hurt kittens.

I'm still drinking green juice in the mornings, though. I can snip parsley from my garden now.



And I still get excited seeing all those veggies laid out before me in the seconds before they're killed for my pleasure.



El Cancro will have to put me in a headlock before I give up the liquid gold.


Here's the recipe if you want to be cool (this makes two big glasses):

6 kale leaves
3 celery sticks
2 apples
2 cucumbers
1 small bunch of parsley
1/2 lemon, peeled
1 small knob of ginger, peeled

Thursday, April 17, 2014

The thing no one tells you

If you ever get cancer before you're 55, come see me and I'll bake you a batch of organic martinis and say "fuck" a lot. You'll get enough pity and politeness and a smattering of "my aunt died from cancer 10 years ago" from other people, so get your balance where you can. There's nothing lady-like about the c-word.

I'll also tell you the thing that no one else will: that life continues around you in the most rudely mundane ways while you grapple with being a relatively rare statistic and your insides are quickly turned into dust.

Nickelback still lives and plays somewhere in the world. Charlie Sheen still has a career. I have to make lunches, bleach the stains off Frances' new pants, pay my gas bill and fret about how my puny hot water tank will handle two teenage girls in a few years.

It keeps on keeping on in chemo land, too.

While I try to feel badass and wonder whether the burn in my two-day old poke is from a slipped vein, an allergic reaction or my 6-year old smacking me in that spot a few times the night before, the nurses joke about keeping each other away from the Easter candy someone has brought in for them so they don't get fat.

While hipster volunteer girl explains the concept behind Tom's shoes to a frail old lady half-asleep in her chemo recliner beside me, a woman on the other side of me looks about 10 minutes away from death she's so thin and pale and begrudging of the smell of my salad.

And while I wait for my parents to come back from visiting another woman they know who's sitting around the corner and on a new cocktail because the old one stopped working, a youngish red-haired nurse stops by and says nicely, "Can I please take one of these two chairs?"

"No, sorry, my parents are sitting there." I'm polite back.

"One of them can surely stand." Politeness = poof.

"They're old, that wouldn't be nice." Bitchface = on.

"Our policy is one support person per patient. I'll just take the chair now." She grabs it and walks away from my fallen face.

I'm two days in. I don't get my handy port put in for three weeks. That's three potentially horrible pokes from this chair-stealing woman. But after growing up in a bit of a raw area of the city and facing countless calls out of car windows, I have a whole retaliation spiel ready for her in a nano-second. It stays in the back of my throat.

She's a rare pimple on the otherwise lovely horse's ass that is the BC Cancer Agency in Victoria. The nurses there give you secrets. They answer every ridiculous question and tell you what else to ask and when to ask for it. They gossip about the oncologists and celebrities and vacations and make you forget that your throat could close up at any moment from this new liquid pumping through you.

I've got round one all wrapped up now and the side effects aren't huge but they're noticeable. Most wonderfully is that after just one go, the rash on my chest has softened. I thought at first I was being a tad optimistic, but after sleeping on this bit of good news, I can see that it has indeed changed. I'm wiped in the afternoon and sleep overtakes me like a general anesthetic around 3 pm if I'm reclined ever so slightly. And that familiar burned out feeling has already started to settle in my mouth and digestive tract. It's the thing that will make me hate all food and drink and question why we don't just swallow pills for nutrition. Even tea gives me indigestion now and I'm starting to make plans for filing away all my favourite things until the Fall.


On the mundane and wonderful side, Stella won first place in her age group with her very first science fair this week at UVic. She grew crystals in epsom salt baths and was far more studious about preparing for it than I expected. I found out the good news on Monday while I was getting pumped with my first drug and beamed all over the ward, trying not to be sad that I wasn't there to see her win the award.

And today I went to my daughters' student-led parent conferences and listened to Frances read at a level 17. But the most delightful part was that I glanced at the reading level of another girl in her class who's always been touted as a prissy little genius and who's turning into a bit of a mean girl and she's at a level 15.

I know. I'm a petty and terrible person who's unfit to be anyone's mother, but suck it, mean girls who aren't me!

Tuesday, April 15, 2014

Start your engines

I know it sounds fucked to say "I finally started chemo!", but "I finally started chemo!"

The last go round four years ago I started a mere week after I was diagnosed, so having to wait several weeks this time feels like I'm scheduling a sought-after facialist or waiting for a great jacket to go on sale. I get that I've been waiting for tests and scans and consultations, and it's truly amazing how quickly I've been pushed to the front of the line (do 90-year olds with cancer get the same queue-jumping rights?), but enough already.

The final step was last Friday when I had an echocardiogram and saw a cardiologist for the first time ever. If I believed in the heavens, they indeed opened up above Dr. M's head that day. Not only did he tell me my heart was fine and that even if I experience some damage while on Herceptin, that it would likely just be a matter of stopping for a few weeks and then starting up again, he gave me something pretty rare in the traditional medical system: empowerment.

The beautiful thing about specialists is that they've generally been around awhile and have developed opinions about things. I happen to love opinions, and Dr. M was full of them. He described in minutiae the ins and outs of my Mugga scan, what it was looking for, why it might have turned out a less than stellar result, and why the echocardiogram (which is like an ultrasound on your heart) tells him everything he needs to know about heart performance without all the pesky radiation exposure.

"You CAN say no to the Mugga, you know," he stated. I get that I always have options, but he went through exactly why and how to say no, outlining what prolonged and repeated radiation exposure does to humans and how we're so casual about it these days. Most importantly, he told me he'd back me up 100% with any doctor who wanted to turn me into Karen Silkwood.

I wept a little on that examination table.

With my heart passing inspection, my first chemo was scheduled for Monday afternoon at 2:30. While I was waiting 90 minutes yesterday to get blood drawn in a last-minute pre-chemo check, my oncologist called me.

"Your heart is fine," she said. Uh, yeah, bitch.

"And Dr. M and I agreed that you would get an echocardiogram every three months." No mention of the quarterly Mugga, which is standard practice in cancer world. I didn't even have to put up a fight. I may now be in love with Dr. M.

Don't get me wrong, I love my oncologist and her robot ways, but her incessant bad cop routine drags on a girl's ass. And I know it's ridonculously childish, but I've taken to giving the finger to her house when I drive by (which is every day, because she lives on my fucking street, yo!). Small pleasures.

I arrived at the chemo wing yesterday expecting a 3.5 hour extravaganza and had all my classic sickie food ready at home.

When I checked in, though, the receptionist told me I'd be getting my first round over two days - last-minute change. Dr. A wanted to see how I reacted to the brand new drug (Pertuzumab) before she combined it with the other two drugs (Taxol and Herceptin).

It was hoppin' in that chemo joint - oldies congregating all over the place, so I had to wait, and was getting anxious about the anti-nausea drug I had taken "30 minutes before chemo", wondering if it would wear off by the time I got poked.

It was an hour before the needle was in me and another two hours before I was out of there.

I'd like to think of myself as a friendly gal, but who am I kidding? I hated being wedged between old people in various stages of their treatment, snoring, complaining, confused, chatty.

I swear if I'm ever President of Cancer, I'll design a chemo ward for 40-year old women where the nurses are mute and look like Don Draper or Ralph Fiennes (in his English Patient Days - before he got all burned up) or Colin Firth (not from the English Patient Days, cuz he was pathetic in that movie - more like recent times in all his 50-year old glory) and there would be Ramones playing (I wanna be your boyfriend) with maybe a little Kate Bush thrown in so we can get a little weepy for a moment and don't hurt our necks from bobbing too much over Johnny's guitar riffs. There would be foot rubbing at regular intervals, and maybe a league (gaggle?) of gay best friends to play with our hair, and carts and carts of David's Tea and Mast Brothers chocolate. Do I have your vote?

I decided to keep the line in my arm, because it was a great one, but it sucked sleeping with it and having a bath this morning instead of a shower. It was also harder to give the finger to Dr. A. Such is life.

No apparent side effects from the Pertuzamab, so dominating one out of three so far. I have a consultation with a new surgeon today and then back to chemo at 12:30 where I'll spend another 3.5 hours getting pumped full of toxic craziness. But we're underway now, folks. A mere 25 more rounds to go...

Wednesday, April 9, 2014

Can you feel it?

I blame high school for making me inactive. Sure, it was 25 years ago, but the day I found out P.E. was an elective I could replace with Fashion class was the day I lost my appetite for regular exercise and learned how to correctly pronounce Herm├Ęs

I was a pretty active kid - soccer, baseball, basketball, track & field, swimming, biking, skiing, sweatin' to Jane Fonda's workout tape (yes, I CAN feel it, Jane!) - but when grade 11 hit, hanging out with skater boys and doing a variety of "other things" was hella more interesting. 

Physical activity became pretty random. Other than dancing at clubs or walking everywhere when I lived close to town, my late teens and twenties consisted of occasional trips to a gym to try to build up some routine. It never took. When I had babies, the walks were legendary (and sanity preserving), but still only walks. Since my diagnosis in 2010, I've tried to make running a habit, but the misery of it has never transformed into the legendary high. 

I still walk and hike occasionally with my kids, the bike comes out on sunny days, I own a rebounder and a gaggle of workout vids that never come close to Fonda and I throw a mean Prince dance party on Friday nights, but if I have a choice on how to spend my free time, it involves reading or writing. I'm like one of those pale, cooped up English writers without the actual English writing talent.

This is a huge embarrassment in my life. I'm surrounded by friends and family members who have found their exercise groove and make it part of every day. Two diagnoses and all this research later and I'm still holding onto the ridiculous justification that I've never had a weight issue so it's not urgent I change. See what I mean? Embarrassing.

There are three stats that have embedded themselves into my eyeballs over the past four years:
  • based on my situation, there's a 30% chance I could die from this cancer
  • regular alcohol consumption increases the chance of recurrence by 50%
  • 3-5 hours of exercise each week reduces the chance of recurrence by 50%
The death one only peeks out in the darkest of nights. The alcohol one I've tried to take to heart, but I can't say I've been diligent about not having wine with a good pasta. The exercise one hangs over my head like a humiliating test score. This humiliation needs to end.

In the past week I've decided to dive into my natural dilettante tendencies and try a little bit of everything to see what sticks. 

I bought a 10-session card to the gym at my local rec centre and have donned my red hat to use the treadmill and elliptical twice, surrounded by old women who are fitter than I've ever been and UVic students sweating off Felicitas beer.

I went to a 75-minute yoga class yesterday at a new studio by my house and did my downward dog behind a farty autistic man who kept shouting "what song is this playing?!" Despite the sensory overload, the yoga was hard and good but I felt a bit douchey walking to and fro the session with my yoga mat under my arm. I became that woman (I swear I wasn't wearing lulus) and I was ashamed, my friends.

I'm also determined to be a good wife to the Englishman and take up gardening for real this year. In the one day I did it on the weekend, it made me a good sore and I loved it.

There are a thousand reasons why I haven't been successful at this, but none of them are valid. I haven't made this a priority. Which sounds fucking ridiculous when you look at that stat. So I'm embarrassed, but I'm doing this now. All in.


Monday, April 7, 2014

Nesting

When I was pregnant the first time, I had only a few days off work before I delivered Stella unto thee. I took advantage of the time by becoming the stereotypical nester without all the adorableness. I lugged 75 lb bookcases downstairs by hoisting them on my strong Italian back, I cleaned out under the kitchen sink so I had just the right amount of poisonous materials to prepare for baby, and I picked fights with landscapers and linecutters, being sure to point at my belly if I got any guff.

I've been off work for a week now and am still waiting for my first chemo appointment to be set, but I'm in full-on nesting mode again.

Until you've been faced with some kind of extended leave from an all-consuming job, it's hard to understand what it does to your mind. I become a different person as life takes over. I like things I didn't always enjoy before and get baffled over why I used to be so cranky about them.

Like hanging out with my kids (don't judge, they're not always a barrel of fucking laughs).


Or gardening.


I'm also trying to cram a few mindless things in while I wait. Like finally watching Game of Thrones so I can consume season four simultaneously with my boy, memorizing the Jay Z part of Empire State of Mind so I can embarrass Stella when she's a teenager, or taking endless selfies of my hair before it all goes away again.


I've been cramming a bunch of healthy habits into my days, too, to try to establish a good pattern for my new life and balance all the coke-snorting and human trafficking.

I paid the $450 and joined Inspire Health. I even went to a dreaded info session and hung out with two older gents who were battling esophageal cancer and slow-moving prostate cancer (smug bastard) as we learned a bunch of shit about how the BC Cancer Agency treats the tumour and Inspire Health treats the whole person. Their philosophy marries science with self-care and is fantastically prescriptive with how to go about making the right life changes. And their pithy quote? Don't deny the diagnosis, just defy the verdict. You had me at hello.

I spent some glorious, uninterrupted time with my boyfriend, eating vegetarian from food trucks (btw deep-fried avocado is the stuff of dreams) and dithering about town hither and yon.

We decided to talk to a tattoo artist who was recommended by Bif Naked and who's married to a rather awesome sounding woman who has just gone through treatment herself. After the awkward cold open of "what exactly is involved in getting a... er... tattoo?" we talked about cancer, infection and joint tats and he was just so lovely. It sounds completely stupid and if he read this he'd be all "that's messed up, dude", but those five minutes in the parlour (do you still call it a parlour?) were a bit magical. You do get moments like those when you're going through shit and looking for bright spots.

The nesting continues this week, but now it's conjoined with cancer stuff.

I'm meeting my parents for brunch today and then picking up my anti-nausea drugs. I'm making use of the gym membership I bought, but between appointments with a radiation oncologist, general surgeon and cardiologist. And then there's the blessed chemo, whenever that comes.

I'm as prepared as I can be and feeling relatively de-stressed, but don't send any landscapers or linecutters my way. Or rather, wait until I'm bald so I have something germane to point to while I go off on them.

Wednesday, April 2, 2014

Scantastic

Let me preface this post by telling you I'm choosing to feel very optimistic about my scan results and prognosis for many reasons, some of which involve a certain river in Egypt.

I had the delight of experiencing the Mainland cancer system yesterday and the volume and wait times that go along with it, but got my first PET scan under my belt. It was tedious and the nurses seemed too young and flippant about my drug addict veins, but it all worked out in the end. Having the pre-scan wait time surrounded by my lovely Christy, the absolute gem that is Bif Naked and my aforementioned stalwart Englishman made it all worthwhile.

Pete and I had a lovely time in the Vancouver sun and took advantage of the boyfriend/girlfriend time.


Then we raced back to Victoria today for the dreaded scan results appointment with Dr. A. Nervous as all fuck, but so giddy in the waiting room while we sussed out the newbies and cancer rubes around us.

Dr. A delivered the news in her patent pending straight-up style and was endlessly patient with our billions of questions. Here's the good news:
  • No cancer in my bones
  • No cancer in my organs
  • The CT scan found no evidence of cancer anywhere else in my body
Let's all kiss our hands and throw those kisses to the audience. This is big news. Like REALLY big news. So I breathed a little at this point.

Here's the bad news:

The PET scan showed evidence of cancer in some lymph nodes in a few different places.

Some of this evidence is hard, like the nodes in my chest wall. Some of it is dubious, like the nodes in my neck, which could be benign and because I'm fighting off a cold. And some is disappointing, like the small enlarged node under my right arm, which was previously my non-cancer side. Here's Dr. A finding that one and me feeling her find it:


The good of all this is that none were large enough to be picked up on the CT scan, so all tiny, but still there.

A bit more bad news:

My heart is now operating at 53%, where before it was a healthy 68% at my last test, post-chemo. Dr. A doesn't know if this is the effect of the previous chemo, the crazy strep I had last year or a one time bad test, so I have to get another test to figure this out. The bad part about this is that the chemo drugs I'll be taking this time around are also hard on my heart, so I may have to supplement with some kind of heart medicine and a trip to a cardiologist.

And just a tad more bad news:

I have scarring on my lung from something I got during my seventh round of chemo last time - ground glass syndrome, which is a lung disease like pneumonia that prevented me from going my full eight rounds last time. The bad part about this is that one of the other drugs I'll be taking in my next chemo immersion has the potential for fucking up my lungs even more. But this one is a watch and see situation.

I start chemo next week on a brand new cocktail my doc had to get special permission to put me on. In the meantime, I have appointments with my plastic surgeon, a radiation oncologist and a surgeon so they can all say "yep, Dr. A is right, we won't do anything for you right now." I'll get my first round through a vein in my hand while I wait for an appointment to get a port, which is a little catheter surgically implanted in a chest vein to avoid weekly vein searching.

Dr. A was extremely pragmatic about my prognosis. She admitted that a recurrence is ballz (in so many words) and not something you'd wish on your worst enemy, but with drugs (of course she'd say drugs), she can extend my life by years. She was good enough to play teacher and spell out all the potential side effects of the chemo cocktail I'll be getting, which range from hair loss to allergic reactions and anorexia.


Two things:
  1. Everything cancer docs tell you is based on research and analytics and is by no means holistic or even very specific.
  2. These people have no idea who they're dealing with.
I'm extremely optimistic about this shizzle. On Monday, I signed up for the full meal deal at Inspire Health and plan to assemble every weapon I have to extend my life by decades, not just years. The drugs are a nice touch, but they're the tip.

So let's get back to throwing our kisses to the audience.