Numb

I got a curveball yesterday when I met with Dr. A.

I had aced my side effects test with the nurse during my pre-cycle 6 consult but just after she told me she wanted to clone my blood (except the cancer part, peut-être), I told her my neuropathy was progressing.

Neuropathy is nerve damage in your extremities from things like diabetes or chemo, and over the past month or so, I've been noticing tingling in my toes and fingers... not enough to keep me from jammin' on the 6-string with my garage band, but enough to notice when I tie my runners too tight or wash dishes in hot water. 

The way the cancer docs see it, a little nerve damage is okay, but if it gets to the point where you can't do up the pearl buttons on your cardigan, the chemo drug causing the neuropathy must be shot down from the Empire State building.

In my case, it's the Coke Classic of chemo drugs - Taxol - that's doing the damage. It's also responsible for the other typical side effects, including my teenage skin, eyebrow removal, loss of taste and digestive woes. It's the drug that takes the longest to infuse, the one I need to pair up with a bump of Benadryl and a steroid, and the one I actually feel going into my jugular during some sessions, filling me up with a sick, poisonous warmth.

When Dr. A came in the room after the nurse had left, she said she was concerned about the neuropathy.

"We've been very aggressive with your unusual weekly treatments... we took a big chance with you and you've handled it all very well, but this is a judgement call now. There's no real evidence that 8 cycles is more effective than 6, so I recommend we stop the Taxol now."

"Um... I haven't started the sixth yet..."

"Oh... let me look back at things here." Flip, flip, flip goes my giant binder of all things cancer.

At this point I'm thinking Dr. A needs to get to her French chateau, stat. Or at least get a proper assistant to brief her before every appointment. And when I see I weakness, even outside my area of expertise, I get all control-y and assert myself more than usual.

"I feel quite comfortable going ahead with the Taxol to complete cycle 6," I said in all my infinite cancer-trained wisdom. "The neuropathy isn't that bad and I'd like to see this through."

Dr. A got that faraway, focused look on her face, smiled a bit and nodded at absolutely nothing, like she was listening to my 6-year old yammer on about how some dogs are brown, but others aren't. We sat in silence like that for an awkward 20 seconds. 

"I recommend we stop the Taxol now," she said.

Apparently, the nerve damage can continue past the last session, and she didn't want me to turn into a 42-year old with completely numb hands and feet, so the risks outweighed the benefits in her mind. I could have pushed, but I had nothing to offer up and this is Dr. A's only wheelhouse. She knows chemo like no other doc. I couldn't take that away from the little lamb. So I relented.

This means that beginning today, my chemo consists of two drugs, not three. It also means chemo moves from weekly to every three weeks. No nasty steroid and Benadryl side effects, perhaps a growing of caterpillars over my eye holes and an official move to phase two of my treatment, a whole three weeks early.

It seems fitting to insert a gigantic "YAY" here, but like everything in cancer land, a girl needs to take a moment to process and get out of the numb state of a curveball first. 

Chemo is like a safety blanket - albeit one that stinks like shit and slaps you across the face when you're not looking - but a safety blanket nonetheless. Taxol, which comes from the bark of a yew tree, is one of the only proven drugs used to treat metastatic breast cancer that's been around for decades. So it's a jerk, but it still mops your floors. And now our relationship is over for good. 

I'm still in for several more months of chemo, but dependent on how today goes, the side effects may be minimal. And if the PET scan in August shows good news, I will move on to phase three, where the chemo-lite continues but I move onto more dignified conversations about radiation and surgery.

Fuck it. Let's give this unexpected news a big "YAY" for now. I'll move on from the relationship and figure out a way to reverse the neuropathy, even though Dr. A said, with a touch of medical smugness, that nothing helps and only medication can address any pain. 

When my garage band goes big, the good doc will get front-row seats, so she can see my fingers happily bleeding and gets the spit flying from my microphone as I swing it all Joey Ramone stylez. 

In praise of 42

Esquire says this is the year of the 42-year old woman. Praise be. If this undisputed fact can counteract the horribleness that people (like me) born in the year of the rat are going through in 2014, even better.

The big problem with Esquire’s claim, other than the obvious sexism and general bullshit of the mag, is that their 42-year women look like Sofia Vergara, Cameron Diaz, Jennifer Garner and Carla Gugino. All symmetrical babes, to be sure, but in the same bodacious, traditionally feminine kinda way. Boring.

Listen, I love curves. I love long hair. I love appropriately drooped (or not) breasts. But madre de dios, I’d love to see a wider range of woman encouraged to show up in wet dreams.

I turned 42 last Friday and have skin like a teenage boy, a sparse buzz cut that releases hair on the regular, like a Charlie Brown Christmas tree, no eyebrows, one tit, a boatload of scars and a body more like an H than an 8. And despite the eye-opening days of early Women’s Studies classes, trading my thigh-high socks for Fakenstocks to really deconstruct all that gender shizz while sitting beside the white guy in the dreadlocks with the soul-searching demeanour I wanted to smack off his face, I’m still working on figuring out the femininity question.

The fact that I’m even thinking about something relatively nuanced like femininity and not maudlin garbage like death by 43 is score one for my state of mind lately. Between the chemo side effects, I’ve been feeling great, especially upstairs, but it's been a conscious choice after a period of self-inflicted hibernation.

I’ve been waking up at 6 am to walk (even this morning, the day after the end of chemo round 5), I’m off white flour and all non-fruit forms of the crack known as sugar (that's a whole other post) and am just generally feeling entirely hopeful and grand about life.

So I uphold Esquire’s assertion that 42 is the absolute shit. I’m not represented in their list of babes, but I feel more like myself today than I did back when I rocked the F-cups. I still hate the pitying looks from strangers when they put 2 and 2 together with my missing eyebrows, lopsidedness and Sluggo hair, but I care less about perception than I did 20 years ago. And I have zero desire to return to the university me, trying to figure out whether it’s ok to look like a ho-bag and study the history of feminism at the same time (if I knew now what I knew then, I’d keep the thigh-high socks a little longer).

Even if I’ve been looking more like David Bowie lately than a parasol-carrying babe, I’m praised often by my live-in boyfriend, who may be sucking up, but I don’t care.

And maybe the whole point of this exercise is that my girls will grow up knowing a woman who looks a tad strange but manages to walk tall despite it, can squash rogue cells with her every fibre, make a mean chicken Milanese and argue the panties off anyone who dares cross her. It's a small percentage of womenfolk I'm influencing, but that uni degree is finally coming in handy.

Cramming

Since my very first deadline, back around the time Xanadu was born and I was wearing the shit out of barrettes with ribbons attached, I've been a crammer. I get all serious like in the days or hours before the thing is due and spend the rest of the lead up doing something more fun, like looking at the room and seeing it needs sweeping.

I can't really blame this one on my parents, but maybe it has to do with birth order and my two older brothers; getting either "oooh, you'll do very well then!" or "oooh, we better watch out for you", depending on which one of them I mentioned to my teacher at the start of the school year. I needed to strike out on my own - to not be the smart, kind one, or the sporty, sassy one, but to be the one who kept you on your toes, always guessing.

Actually, I've done my own 30-second psychoanalysis on this one. I was terrified that if I put too much work into something and did a mediocre job, that my sense of self would be shattered. If I did everything last minute, and got a decent mark, I could always tell myself that if I'd tried harder, I could've joined the 100% club. Classic fear of failure stuff.

Now I'm in the 6-week run up to my second PET scan on August 27, and I had a moment last week of realizing I was doing the same fucking thing I've done all my life. I was doing most things half measure and planning everything for "after chemo", like I was a normal, healthy person who had all the time in the world to figure this shit out.

Sure, I'm walking almost every day, eating better than I ever have and trying to reduce or rather differently process stress, but in the serious scheme of things and the spirit of wanting to live forever, I'm still dabbling. I'm still often behaving like I've had a first-time, early stage cancer diagnosis or worse, like a woman who switches to almond milk because her girlfriends said it was "sooooo good for your skin."

I have aggressive cancer, and I haven't been aggressive enough.

Last week, the heart test results gave me some control back and on Friday, my lack of real dedication hit me like a big crashing wave. I had Pete beside me on a walk along Turkey Head to reflect my jumbled state and we came across a park bench with a memorial dedication for someone I knew, also born in 1972, who died in a motorcycle crash several years ago. I was humbled.

Since then, I've felt renewed. I've got 6 weeks to study for this PET scan and not only am I already deep into the run-up, I'm ready to get the gears from all of yous for a less-than-stellar outcome. No more cramming.

Also, I look like an androgynous imp these days and those Xanadu barrettes would NOT go with my new faux hawk.

Stronger

I hate to admit that cancer has the power to give me my highs and lows, especially when I'm more of an in-the-middle type of girl, but I had a smack and a tickle all in one go today, c/o the administrative side of the disease.

I had my three-month echocardiogram on Friday, with the kids holed up in the waiting room on iPads while I had suctions stuck to my torso and an ultrasound wand slipping around my heart. At last check, in March, my heart showed some deterioration from the Herceptin the last go-round, so Dr. A has been ever-vigilant about ensuring I get no further damage this time.

We started our appointment today with her looking with concern at my test results and telling me there has indeed been degradation. She read out the results word for word, which is very her and was uber helpful, because it contained a lot of cardiologist lingo that made me drift to Tuscan sunsets and the perfect Chianti.

She recommended I see another cardiologist and that we eliminate the Herceptin and Pertuzamab for tomorrow's start of round five while everyone figured out what the fuck to do with my ancient heart and its failure to cooperate. I was focused on the delays all of this would cause and started to sink into the practical, but depressive acceptance I've come to know well.

But because I also take great joy out of annoying my oncologist, I started to ask a bunch of questions until eventually she looked down at my giant cancer binder with confusion and said, "I think I may have the wrong report." Then she leaped out of her chair and stormed out of the room, leaving me to ponder how much shit whoever handed her that report would be in.

Ten minutes later, she returned, red in the face. "I'm so sorry. Someone handed me that report and it was from your last test in March. I'm very very sorry."

"No worries, doc," I said. But I didn't say "doc" because I'm not from the 1950s.

As she promised to call me later with the actual results, the actual results suddenly knocked on the door and handed themselves to her.

She read them quickly and then smiled her little chipmunk smile and exclaimed, "Oh! Your heart has improved! That's very unusual."

Yeah, bitch, cuz I be walkin' 5 km a day since April. That's why your little test was no match for my gigantic heart (actually, I think size and actual hearts are not good bedfellows, but whatevs).

So despite the machine gun blasts of chemo every week, I'm stronger than ever.

I felt like that Wildling giant from GOT. I could pound logs into the frozen ground!

Rather than ask her if I could go away on an international trip in September, I told her the plans were set. She wrote down the dates and she said she'd be close by, in the south of France, at the exact same time. And she said it in such an encouraging way that I got the feeling if I phoned her all panicky because of some cancer question in the middle of my squid ink pasta in Venice, that she'd gladly take my call in her chateau.

We came to a new understanding today, Dr. A and me. She's capable of making mistakes. And I am capable of annihilating this cancer so hard, they'll have to come up with a brand new word for me.

Forgetful

I'm getting forgetful.

Don't call on me if you need someone to phone in an emergency or play $25,000 Pyramid. Unlike the affliction where you can't remember who played the mom in Family Ties, regular, useful words like "tent" or "door" or "fugly" have lodged themselves in a part of my brain that is no longer producing enough new cells to keep the flow going.

This is annoying for a person who likes to think she writes. I wish the forgetfulness would settle in other regions of my short- or long-term memory. Like that time I danced for hours with someone I thought I had recently gone on a date with, only to realize it was a different guy. I don't need that one anymore. Or what about when I thought I was ordering "that donut thingy" in the window of a Turkish cafe and was then presented with a plate of shaved, unidentifiable meat that I had to eat in shame. That one can go, too.

Actually, what I'm needing a big break from these days is my bloody self. I've been stuck in a bit of "I'm sick of cancer" ennui recently, and it's not attractive. Sometimes a girl just wants a day where everything doesn't have to have meaning or self-improvement purpose. Like getting teary at my favourite escapist living abroad TV show because shit, man, I'll never get to go there. Or projecting into the future when my daughters could produce or adopt some little sprites and not experiencing the rush of loving kids who didn't come from my immediate womb.

Listen, I know there's a chance I could beat this cell division business for realz, clean up my act and live to be 100 with the help of good living and good drugs. But the reality is, probably not. And I know that any living human could be gunned down, run down or smashed by a falling frozen hunk of airplane toilet sludge at any moment of the day. Life is short. I GET IT! But before cancer, those possibilities were whimsical, not at the front of my brain every single day.

It's even difficult to do unusual things for me, like go to Diner en Blanc, without assigning some kind of bucket list cliche to them instead of just experiencing it.

One thing that's moving me outside the realm of maudlinville is planning our trip in September. We've chosen Italy, because it was the place I would most regret not bringing my kids to if I kicked it in the near future. But beyond that initial morbid thought, the trip is completely impractical, which I love.

I could find out some bad shit from my echocardiogram next week. I could find out some bad shit from my second PET scan in August. I could find out some bad shit if this chemo stops working. It's all entirely possible and a completely idiotic state to be planning an international trip around. But I don't care. I'm done with letting my cells determine my fate.

So we're leaving on September 26 and going to San Gimignano, then Venice, then Rome.

And despite my objections to the cliches of cancer, this one is a bit of a bucket list destination. Besides counting half my self as Italian (sometimes it's the top half, sometimes the bottom), when I was 22, donning Bjork buns and in Venice with my cousin Tasha and her boyfriend (now husband) Dave, I promised myself, sitting in Piazza San Marco, gazing up at the pink lights in the square and hearing  three different string quartets playing to the lap of waves in the Grand Canal that I would come again when I was madly in love.

Going bizarro

I opened the kimono on Monday, took a deep breath, and told both the chemo check-in nurse and Dr. A about all my side effects. I got a resounding, “So…?” 

When I got to the bleeding nose part, the nurse said, “But it eventually stops, right?” My takeaway: unless I’m craving baby heads for breakfast or actual fire is coming out of my ass, my pathetic side effects are child’s play in chemoland. 

I learned a few other things at that visit by asking more questions than usual. I’m now on cycle four of six initial cycles, so will officially end this phase in mid-August. Fuck yes. I’ll get another PET scan then to see if another two cycles of the same protocol are warranted. If not, I’ll move to phase two, which may just be a combo of the Pertuzumab and Herceptin, the powerhouse HER2-positive fighters (HER2 is my aggressive strain of the c-monster). 

How many cycles is still unknown, but infusion time is 60 mins, with no pre-meds; a dream compared to the four hours I get with all three every three weeks, including the steroid and Benadryl pre-meds. Plus, it would mean saying bye bye to the weekly Taxol, the classic chemo drug with all the classic side effects.

Herceptin can be hard on my heart, but I get another echocardiogram in July to see if there’s been damage. As far as I know, the Pertuzumab causes mostly loss of appetite, but until I remove the Taxol, I can’t be sure if all the other side effects (indigestion, heartburn, hair loss, etc.) are its fault alone.

I did find out why I get all the “you have an unusual protocol” comments from the nurses and other doctors when they find out my cocktail: I’m the first person at the Vancouver Island Centre to get Pertuzumab outside a clinical trial. When Dr. A said it had just come into circulation, she wasn’t kidding. With Herceptin as the HER2 wonderdrug, apparently Pertuzumab is its new BFF and does even more to battle that particular beast. Yay me.

I told Dr. A my family wanted to go away in September and she was surprisingly accommodating. “Just let me know when and we’ll work around that.” And then I asked her a shitload of other questions while she was trying to write me a prescription and in true single-tasker style, she excused herself from the room so she could concentrate on what she was writing. Nerds are adorable.

I felt so buoyed by going against my instinct and being honest about how I was feeling that I truly went against all my pre-conceived notions of my 9-year old and took Stella on my 5 km walk on Tuesday, pre-chemo. 

She was such a great sport and I was so touched by how game she was that I would have called Pete home immediately to put another baby in my belly if I wasn’t barren right now and… well… an actual thinking woman.

Yesterday we went again with Stella’s BFF in tow and went even further, with a cream soda at the end as a reward. It was delightful.

I’m officially becoming Bizarro George Costanza and doing everything the opposite from now on. It can only turn out to be a good thing.

Push it

It's been a tough week.

Chemo was earlier than usual on Tuesday, which I thought was going to be good, even though the kids were home that day, enjoying the strike, so logistics were a bit fucked.

The girls were really good. They let me have a glorious 45-minute nap when I got home and then Frances woke me up with her usual burst into the room, yelling something rando like "I think Putin is evil!" It's adorable, actually, even though you feel like you're rotting in a dungeon and the king has ordered someone to wake you up abruptly and confuse you every hour before you ever get a good REM in.

The real problem was, when she did wake me up, it was only 3 pm, which meant I still had an entire afternoon, evening and night to enjoy the effects of the Taxol. For a couple of hours I sat outside, hunched over, and did a crossword puzzle to keep my mind sharp, Googling most of the answers, because, hey, I'm going through chemo, assholes. The girls played around me, poking me occasionally and I felt like the best mom ever.

The rest of the night was a blur, but with the zing of the steroids I felt like I was back in the thick of having an infant in the house, when your body begs to be released to your bed but your tiny captor reminds you your needs are no longer important. I slept maybe two hours before pulling myself out of bed and retreating to the couch to look up vaccination protocols for Kenya until the girls got up.

In the days since, sleep has been brutal and my cold keeps a vice grip on me, making me lazy and unambitious. But I continued to get out for 5 km every day, not feeling completely bought in to this power walking nonsense but pushing myself to complete something.

I meet up with Dr. A on Monday for another check-in and I've decided to lay everything out on the table: the neverending cold, the bloody nose, the heartbeat speed-up, skip, then catch up when I lay down, the hot flashes, the bad skin.

I've been pretty mum about this stuff because I have this fear that if I admit any side effects, I'll be stripped of my chemo badge. No soup for you!

I don't mean that in a "Oooh, so Carissa's not a master at this thing after all!" complex. It's more that I'm terrified that if I have any complaints, I'll be pulled out of the race for good, with crap options for saving my life. There isn't a shitload of other chemo drugs I can go on. If I have serious adverse affects from these ones, I'll either be forced to stop altogether, or I'll get some chemo lite. And I'm not ready to be punished that way, especially when pushing it with this brutal protocol is having some fantastic results.

Tuesday night, while the girls were getting their book readin' from Pete and not me, I glanced at my chest and saw that my cancerous rash was not only soft, it was skin-coloured. Normal. Not visible. So this is good shit I'm on, my friends. If I could have jigged on the spot, I would.

At that moment, it was okay that my facial features were rapidly disappearing and I had the libido of a eunuch. It would all be worth it if I could continue to the end.

But after putting up with my monitor (aka Pete) badgering me every second of every day to own up to feeling not so hot, I raise the white flag. I'll spill my guts next week and they can do what they will with me.

I'll continue to push it, though, no matter what the surgeon general recommends. And when you ask me if I'm tired like you are at 9 pm, I'll smile politely and tell you I'm coping quite well, thank you.