Thursday, June 19, 2014

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.

Friday, June 13, 2014

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.

Monday, June 9, 2014

Work family

While I write desperate love letters to my nose hair, begging it to come back, and wait for my head hair to evolve into the full Donald Trump, I've been trying to shake this wretched cold that just keeps hanging on. I finish up cycle three of my chemo protocol tomorrow, which means I'm about a third of the way through.

I'm mostly handling the indigestion and heartburn. The teaspoon of apple cider vinegar in a 1/4 cup of water before meals is helping, but the Udo's probiotics are the real star. No more Bloaty McBloaterson and days of feeling like a better buoy than a woman. In general, I feel good about what goes into my body these days. I even survived an entire McCart family BBQ this past weekend on one small glass of white wine. I am officially boring, but I'm gonna live, motherfucker.

My sleeps haven't been stellar, which means I've been reading more than usual, focusing on the mind/spirit part of recovery. Some of the more recent studies I've been digesting show, in a nutshell, that the bigger your network of supporters, the more likely you are to beat the shit out of the supreme mean girl that is cancer. So when people ask me, "how can I help?" it's super simple: send your good energy my way and I'll try not to let you down.

I know it's more complicated and often more practical than that sounds when you're battling the beast. Having close family and friends means I have people to do actual things for me when I need it - like drive me home in my Benadryl stupor, take my daughters on an early morning when you're still in your robe but don't give a shit, send your kids over to take mine away for an hour or bring me food when boiled toast seems like a good idea.

Once those basic needs are taken care of, I crave the giant bear hug of near and far friends, and the biggest, bone-crushingest, bordering-on-creepy-but-never-crossing-the-line embraces I get are from my work family.

After eight years at the flying T in a juicy role that has me working closely with people across the country, I get well wishes from all directions and I feel rich and undeserving every day. These are a few that have left me reeling with gratitude recently:

My friend B has used his good words and deeds to give voice to the shit that is cancerdom through his generous involvement in the Ride to Conquer Cancer. He's been personally touched through the recent passing of his father and although we've never actually met in person, this lovely man in Waterdown, ON has become one of my biggest supporters (see the C.M. below on his ride gear? C'est moi!).

My friend P may win the award for sending me the loveliest email ever this past week. She's even named a tree outside her office in Edmonton after me so she can send me a giant force field of love and nature to weather this storm:

I'm beyond proud of my friend EB for so many reasons, just one of which is that she inspired me to stop kvetching and find the thing I like to get fit. She's been so concerned, present, funny and lovely from the very start of this business and now she has the hair to match her fierce support, all the way from Chatham, ON (represent!):

I get a giant lump in my throat when I think of my extra special boy, PB, in Vancouver, who stepped in with grace and urgency (again!) the moment he knew, who tends my work garden with love and sends me the sweetest XOs when I need them most. Actually, my boss, D, and my entire immediate circle of colleagues throws the most touching emails over the fence on a regular basis and even arranged to have cleaners come scrub my gussets while I eat organic bonbons (actually, I don't know whether they scrub gussets, but will ask posthaste).

My lovely A in Calgary tells me what to watch on Netflix when I'm too tired to do anything else and she knew just the right thing to send me when I was worried my message wasn't getting out to cancer loud and clear:

My team of talented hooligans, who, well... they made this "Carissa, the badass" video for me that I'd love to show you, but I'd likely have to kill you. Just know that I'll never stop crying about it. S, C, S, K, D, EB and A, you make my life. I'll be back soon to undo all the goodness that PB is drilling into you.

And finally, there's D, B and J, who have decided to make something incredibly amazing happen on behalf of my entire work family: giving me and my blood family the gift of a trip to anywhere in the world for a week when I'm well enough to travel.

Gobsmacked. Still reeling. Love my family. Promise I won't let you down.