Feathers and Capes

Several weeks ago I met a woman named Janet, a friend of a friend who, like me, is a young mother with metastatic breast cancer. There are about a million other things that would likely have led us to friendship anyway, but unwanted intimate knowlege of the particular agonies, fears and triumphs of life with metastatic breast cancer is a pretty powerful common ground to share. 

Janet has been at this cancer thing for a few years longer than I have, and she really knows her way around.  I thought I was informed and self-advocating?  Next to Janet I look like a bit of a slacker. But the great thing is she’s a natural mentor, with an indomitable nurturing streak and a determination to empower other people.  She simply can’t stand the idea of cancer bullying anyone, and she does what she can to stop it from happening.

To me it seemed as though she appeared right out of the clear blue sky just when I most needed her, and so I started calling her my guardian angel.  It’s true: I write “Flap Flap” in the subject line of my e-mails to her, and I swear when she sits down at my kitchen counter for a chat I sometimes see tiny downy feathers floating through the beams of sunlight in my kitchen.  Probably not auras.

Anyway, back before we went to Detroit, Janet was at my side making sure I knew that there were lots of ways for me to keep actively fighting this cancer, even if I wasn’t yet enlisted in a clinical trial.  At a time when I felt abandoned by the hospital and health system, Janet offered practical, tangible things I could do, people I could contact, steps I could take so that I wouldn’t feel helpless; like a sitting duck in cancer’s crosshairs.

And one of the greatest gifts Janet gave me was to introduce me to Constantine.  He’s been one of Janet’s secret weapons in her own uphill journey with this beast, and if she’s a guardian angel, he’s a superhero.  She found him on the peer-to-peer cancer support site No Surrender where (under the web name “Edge”) he acts as resident medical researcher.   What that means is that Constantine responds to cancer patients’ questions about treatment options and myriad other confusing matters with clear summaries of relevant cancer research compiled from innumerable credible sources around the globe.  Constantine himself is not actually producing the research in question – which means he remains an impartial and unbiased third-party.  What he does is gather, evaluate and present findings to people who would otherwise be unable to find and make sense of the facts they need to make informed choices about their survival.  And Constantine does all this for free. 

So, while I haven’t actually seen the cape, I think it’s fair to say that there’s some pretty superhuman generosity of spirit at work here.  The sheer volume of information that he compiles is in itself overwhelming to contemplate, but that he then examines case-by-case requests for specific information is giving to a degree I can barely fathom.  And not just because I suck at research and statistics and would rather have my toenails pulled out than have to do it myself. Anyway, I’m deeply grateful to Constantine for his continued guidance, and always to Janet for taking me under her gigantic wings.

I’m telling you, angels and superheroes… they walk among us.

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Unstoppable Dr. Detroit

Just before the weekend I heard from Dr. Detroit and according to her, there has been a delay in my starting treatment with the Karmanos Centre clinical trial because “we are still waiting for the Canadian government to approve your treatment here.”

Um, yeah… Approval from the Canadian government…for my treatment in the U.S.  …Pardon me?

First of all, that’s just what you need when you’re desperately awaiting life-saving treatment: a gargantuan bureaucratic behemoth squatting in your path and waylaying the approval process.  Second, what in the holy bejeesus could the Canadian government be approving, since we are paying for every penny of my treatment ourselves?  And which branch of the government?  And at which level – Provincial?  Federal?

I shared the e-mail with my family and we did a lot of looking at each other and blinking in utter confusion at the total absurdity of the Canadian government’s involvement.  As far as I’m concerned my government lost its say in my treatment right around the time I was told that they couldn’t do anything more for me and I had better look into clinical trials for experimental treatment options.  Which of course I did.  And now they’re holding me up?

We’re all totally stymied, and I vow to get to the bottom of this Big Brother-esque mystery just as soon as I can devote some energy to it.  At the moment however, my focus has to be on regaining my strength and appetite after a weekend of adjusting to the new painkillahs.

Actually, the main reason I’m not banging down doors for answers (other than having no idea upon which doors to bang) is that I don’t have to; Dr. Detroit went on to say that as an alternative to the delay they are opening a compassionate use trial for me that is monotherapy (which is how the drug will be FDA approved in the U.S.) She says they anticipate it opening up in a few weeks.

Okay so how’s that for a doctor?  Something gets in her way – something like, oh I don’t know… a government – and she just goes around it to come up with another solution to get me the treatment I need in a timely manner!  And not just the treatment I need, but the dose at which it will be approved when it goes to market.  In other words, the dose that worked for people in clinical trials! She’s like the superhero of oncologists – she should be wearing a cape, not a lab coat.

We can’t celebrate yet — I still need to hear that they have been successful in opening the monotherapy compassionate trial, and of course that my government hasn’t stopped up the process any further.  And until then, I need to do my part and stay in good enough health to make it to the new start date in a few weeks.  I think I can do this.  I have to. 

Hold on Detroit, I’m coming!

Nothing Gold Can Stay

I should have known better than to title a blog post “Champagne and Sunshine.”  Clearly that was just asking for a smack-down, and oh, did I get one!

Before chemo yesterday I had gone to see the Palliative Care people at my hospital.  Do not panic – I am not throwing in any proverbial towels – I just went to see them to help me get my pain under control, since that’s kind of their area of specialty.  In fact, the first thing they tell you when you go in to see them is that they are not “end of life care,” but are rather specialists in symptom management and in particular, experts in pain management.  Sounds good to me (but I still think they’d better change their name or invest in a big PR campaign because no matter what you do, the words “Palliative Care” are still going to give 90% of the population the willies.)

Anyway, the point is that I came out of that meeting with a whole new drug program designed to manage my pain, one that would hopefully keep me functioning and pain-free after a few days of adjustment.  I was very excited – the idea of feeling mostly normal again was thrilling!

What happened instead was that last night was one of the longest and most painful of my life. My body didn’t respond well to the drugs, which never got the pain under control, and I ended up throwing up and writhing around in my bed for 12 hours.  

Good times. It was like the cancer saying, Take that, miss champagne-and-sunshine.  

Cancer is such a jerk.

Anyway, today is a new day.  Or I should say, this evening is a new evening, since I slept most of the day away. The PC people have rewritten my drug program and I will try something new tomorrow – not tonight – because I have decided that if I’m going to embark on another 12-hour narcotic adventure, I’m doing it in the daytime.  For now it’s just me and Big Daddy, plodding along as before.  Not the ideal marriage, but we’re comfortable with each other and know what to expect.  It may not be champagne and sunshine, but it sure beats all that barfing.

Champagne and Sunshine

My happy high continues – fed in no small part by each new boisterous comment from you, my indefatigable invisible friends; my rag-tag scrappy support crew; my beloved cross-section of the very finest stuff on earth! 

Last evening, in a room flooded with sunlight, my husband and parents and I drank champagne on my bed while Georgia clambered around excitedly, flailing limbs and causing repeated near-spills of the precious elixir. (Luckily the French have special Jedi reflexes when it comes to champagne spills: my husband’s hand would automatically and deftly stop the falling bottle from hitting the floor before any of us anglos even knew it was in danger. Mais, bien sur.)

The colour returned to our faces, and it wasn’t just the bubbles at work. None of us had realized the extent of our dread.  No one had wanted to admit just how much fear we were living in, so we just kept buggering on, as Churchill would say.  And then this news!  This gift!  There was much laughter and shaking of heads in happy disbelief.

Only four adults and one little whirlygig, but the bedroom seemed somehow more crowded – I surmise that there were a lot of people with us in spirit.  Thank-you for sharing in our joy.  I also have a sneaking suspicion there was a spike in the collective tippling of this bog community last night – and why not?  It’s not often we get a chance to celebrate these days.  And one must warm up from time to time in preparation for the big party at the end of all this (when the cancer is just gone.)  But in the mean time I’m considering the wisdom of always keeping a bottle of champagne on-hand to encourage more reasons to celebrate to come my way. Can good karma be bribed with champagne?  Worth a shot.

Brain MRI Results

THERE IS NOTHING IN MY BRAIN!!!!!!!!!!!!!!  EXCEPT MY BRAIN!!!!!!!!!!!!!!

The MRI came back clear! I can hardly believe it (especially as I have a gigantic headache aura as I type this) but it is the best news ever!!

I’m giddy, I’m elated, I’m relieved… I’m stunned and thrilled.  Hope – that fickle flame – has been reignited and doused with gasoline!  The champagne is chilling in the fridge; when my husband gets home (and once we stop hugging and crying) we’ll drink to healthy grey matter!  Could there be a better, happier toast?

Detroit here we come! Nothing in the brain means I’m getting on that train!

Video: Weekend To End Breast Cancer 60K Walk

Today the fine people at the Princess Margaret Hospital Foundation sent me a link to the “Weekend To End Women’s Cancers” orientation video,  which I’m briefly in with my family. It’s a long video (and you should maybe get the kleenex ready) but our little part comes in around the six minute mark.

The video brings back a lot of memories of the 2-day 60 kilometer walk I participated in last September. It was such an emotional experience (I’m barely holding it together in the video… ditto for my mom) and such a rewarding one – I’ll never forget it.  

I am already signed up for the Walk again in the fall and even though I can’t even make it up the stairs right now without losing my breath and coughing, I’m still holding out hope that I will walk it somehow.  I’ve got about five months to get well enough to walk it.  It’s like this: Cancer, you don’t say “No” to me, I say “No” to you. 

Because you know what they say: when in hell, keep walking.

The Restorative Powers of Veal Scallopini

My husband and I went to a movie today!  Yes, as in a movie in a theatre! With actual popcorn! Up and out and enjoying ourselves like a normal couple on a Sunday afternoon – how great is that?  And then out of the dark theatre and into the sunny, breezy spring air, on a hunt to satisfy my latest craving: veal scallopini! (It’s almost always Italian these days, but even I was surprised by the veal.) 

Needless to say I had a great day.  I am feeling much better, and for that I thank the vino(relbine.)  Although a glass of Barolo would have been nice with the veal…

I’m as happy as I am relieved, since I had thought that by last night I’d have seen a bit of an improvement, but didn’t, and began to worry.  In fact, I was feeling so unwell last night that I made the mistake of introducing a new painkiller into the mix and ended up sweating and hallucinating on my bed for three hours.  Nothing too evil, just some white ostrich feathers waving at me from the bedroom ceiling, but still, who needs that?  And unfruling white ostrich feathers? That’s not even my hallucination — surely it belongs to my daughter’s very fabulous choreographer godfather. (Obviously from now on I’m sticking with Big Daddys.  We understand each other – I follow the ‘script, Daddy takes the pain away, and no ostrich feathers on the ceiling.)

Once I emerged from my bad painkiller trip, the worry was still there: maybe I wouldn’t get the bounce-back this time like I did from chemo last week.  I wasn’t really feeling the energy come back like it did two days after chemo last time and I began to fear it wouldn’t happen again, that perhaps it had just been the excitement of Detroit and all the hope we felt that had somehow infused me with a perception of improved health…

It was a depressing thought. But sometimes, when it’s been nothing but painkillers and lousy sleeps and gasping for breath it gets really hard to believe that it’s not always going to be that way.  That it’s not always going to suck that much.  I started to wonder how long I could sustain it, because the only time I wasn’t feeling miserable was when I was asleep, and that only ever lasted three hours at a time.  Those nights can be long, and the thought kept returning, If this is how it’s going to be, how long can I possibly last?

So now that I feel the return of my energy, I’m embracing it – but also trying not to burn out.  Trying, if I can, to store it up so I have some chutzpah in reserve for the next nose-dive.  It feels so good to feel almost normal; it makes me think I can do this. Whatever comes next, as long as I’m not doomed to be a bed-ridden vegetable for all my days, I can do this.  I can come back from this, find a way to beat back the cancer, get it out of my lungs, breathe again, and get my life back. 

Seriously, that’s what a matinee and some Italian food can do for me. Imagine what I’d be like if I got into the champagne?

A Not So Good Day

The good news is that my blood counts were fine and I was able to get Vinorelbine yesterday!

The bad news is that I came home and barfed!

My nurses think it was more likely due to adjusting to Big Daddy + empty stomach + coughing/gagging than the chemo.  Nonetheless, totally gross and uncalled-for.  I slept for about an hour before heading back to the hospital for the brain MRI.  Not easy in my state (but still, what a wonder that lying still in a space capsule while being assaulted by the sound of various pavement-smashing construction tools for approximately 40 minutes delivers a picture of my brain!)  Then home again and weak and exhausted.  And so depressed. That’s the thing, it all just wears you out.

Altogether not a good day.  A completely crap day, in fact.  But I had a better sleep last night and am staying on top of the pain today.  I’m still weak – but I have high hopes for the vinorelbine to begin working its magic again like it did last week.  Also, helping out on the emotional front, my dad is back in town and my cousin from the U.K. showed up for a quick visit, which has boosted my spirits as it always does when we see each other (which is far too rarely.) Although I have to admit, we’d both prefer the traditional pub visit to this bedside visit nonsense. 

Meanwhile my husband and mother (aka: The Executive Committee) have decided that my only job is to eat as much as I possibly can – and super-clean anti-cancer diet be damned.  All that rice and miso soup and seaweed might be good for me, but the pounds were dropping and bones are beginning to stick out where they ought not.  It was a supermodel diet and I wasn’t a particularly fleshy woman to begin with, so the effect was not that desirable.  Besides, seaweed?  Please, it’s enough to make anyone nauseated.  So, the new rule is if I want pizza, I get pizza.  (I don’t want pizza, but I do want pasta… mmm, yes, the fusilli from the Italian place down the street!) My cravings are varied and my appetite sporadic, but I’m eating.

And now, we wait for the results of the MRI.  How do you stay hopeful and optimistic while at the same time steel yourself for the worst?  Can it be done?  The CT scan was clear.  That must count for something.

Never a Dull Moment

These days my emotional state is so tied to my (very volatile) physical state, it can feel a little like a mood disorder.  I was doing fine yesterday, tons of energy, optimistic as can be, when at suppertime I coughed and – POP! – the rib pain came searing back into my body and knocked me on my kiester.

Ah, pain.  You exhausting and depressing thing.  As if the reality of my illness and the difficulty I have breathing weren’t terrifying enough.  As if I didn’t have enough going on with the coughing and headaches and auras and general weakness.  No, we need to round it out with a little excruciating pain.  Come on.

So I took one of the heavy painkillers I like to call Big Daddys last night so that I could sleep.  I’m afraid of the Big Daddys because I know they’re highly addictive, and frankly I don’t need to add Pill Junkie to my current list of problems.  And I also don’t want to be feeling so painless and groovy that I’m not able to connect to the people and world around me. So, until now, Big Daddy and I haven’t made each other’s acquaintance.

But the fact is I need sleep, and I need strength, and pain makes me frightened and depressed.  So I called in Big Daddy. At bedtime, I popped one.  And boy did it work!  Blissful floaty pain-free sleep… for exactly 4 hours, at which point a coughing fit overtook me and I ended up in tears, sitting at the edge of the bed wheezing and shaking in the dark, while my husband rubbed my back and I tried to calm down enough to take another Big Daddy.  And? Sweet sleep again… for a meagre 4 hours, when the coughing trauma was repeated, complete with tears and back-rub. And then, in the morning (this is the kicker) a hangover!! No, really, a bonafide fuzzy-headed hangover! Without the party! Like that’s fair. Obviously this whole pill-popping thing needs some fine-tuning.  And Big Daddy may have the strength, but his stamina needs work.

Meanwhile, Dr. Detroit called with what should be amazingly fabulous news:  it is possible that my spot in the study will open early and I could begin in a couple of weeks!  

But before we go popping the champagne (or the Big Daddys) there is a catch.  I felt renewed and improved following the vinorelbine last week, but 8 days later the symptoms have come crashing back – the coughing is worse, the pain has returned, the aura that shrank and shrank and shrank has begun to unshrink – and I am afraid that if I have to go 2 weeks without any treatment I will be back at the Brink. And nobody, least of all me, wants me going back to the Brink.

The idea of course is that the study would carry me far, far away from the Brink forever and happily ever after. But if I can’t make it to the study start day, there’s a flaw in the fairy tale.  Even if I make it, I could be deemed too weak and thus rejected.  I have no idea how bad things might get in two weeks, but if last night was scary, what shape will I be in 14 days from now? Or 21 days??

So, I want another vinorelbine treatment tomorrow.  Even if it means waiting 3 weeks rather than 2 to begin the study. I reason that I went about 7 weeks without treatment and it did a lot of damage, so I need at least a couple of weeks of consecutive treatment to restore some strength before I do another chemo-fast in preparation for the clinical trial. But I actually have no idea if this is medically sound reasoning, so I’ve put it to Dr. Detroit via e-mail, and await her reply.

And, finally, as if that’s not enough drama for one post: my oncologist’s secretary called in some kind of massive favour and managed to get my brain MRI scheduled for tomorrow afternoon.  

Well, at least it’s never dull around here.

Return From the Brink

Now that it’s been several days of no longer feeling like I’m actually knock-knock-knocking on heaven’s door, I think it’s time to admit that for a while last week the general consensus around here was that I was a goner. That I was on my way out, making my grand exit, rolling the credits.  That I was dying.

I’m wary of tempting fate by talking about it in the past tense, since we’re by no means in the clear, and I am still spending the better part of my days in bed.  But the difference between how I was last week and how I am now is enormous.  I just feel that how close I actually came to the Big Finish needs to be acknowledged because all of us – me, my mother, my husband, my brother and the friends who had rallied around and tried to hold me to this side of the mystic curtain – are just shaking our heads in wonder at my apparent Return From the Brink.

It is hard to say this without it sounding like an exaggeration, but just a week ago I was literally thinking that I had maybe a few weeks at best, and probably not many of them lucid, given the pain and the difficulty I was having breathing. This fear was of course confirmed by the solemn words of various medical professionals, including my dear cancer shrink.  I remember panicking that it wasn’t enough time; that it had come upon me too soon.  I couldn’t look at Georgia without wanting to hold her little body close enough to mine to feel her breathing (which she is able to tolerate for about four seconds.)  My husband and I said “I love you” as we always do, but the words got bigger and heavier, sweeter and sadder.  My mom would put her hands on my forehead to ease my headache and I could feel her trying to pull the cancer right out of my body, trying to draw it away from me and make it stop killing me.  So, even as I got ready to go to Detroit, I wasn’t convinced there was a point.

There were other, less emotional responses too.  I remember wondering if this blog might get published as a book posthumously, and thinking how unfair it would be to not get to be around when it happens.  (Who will get to sit on Oprah’s couch?? Will all of you give your permission to publish your comments along with my posts??)

I also began mentally composing my own eulogy, or a kind of farewell speech for my funeral. I know that’s macabre and a little egomaniacal, but being a writer and  a control freak I’ve been drafting some version of it since I was a teenager.  Besides, I reason it’s a lot easier to make jokes about a dead person when you’re the dead person.

I also became philosophical, wondering if I were granted a reprieve, or a second chance at life, how long it would take for me to start complaining about things like wrinkles or gaining weight.  Whether I would eventually start taking for granted in little ways the people I love and who love me.  I wondered whether I would really be able to sustain wanting and appreciating every single day that was given back to me; if I would be capable of holding on to the concept that each day was a thing once taken and then returned to me, to be treasured, to be grateful for.  To want life that much, continuously – is it even possible to function when you have that profound an awareness of your mortality?

(I swore that I would try.  I’d love to face the wonderful problem of not functioning properly in society due to an excess of awareness and gratitude for being alive.)

Anyway, it is a strange and terrifying thing to get so close to death, and stranger still to be reflecting on it when I don’t actually feel like I’m a comfortable distance from it.  Around here we’ve all begun to tentatively and somewhat incredulously talk about it, like survivors of a car crash or a house fire, still in shock, mere meters from the burning shell of a once-recognizable thing, but starting to believe that we’re safe from immediate danger now.  We’ve started to admit to each other that it really looked like I was going to die, that it could have been days or weeks, that we were all so scared – and that just as suddenly it doesn’t look so much like that anymore. It’s as though on a cellular level, or maybe somewhere near the seat of the soul, we’re all still reverberating from the enormity of it.

And yet we’re also calmer than before.  This comes partly from our new-found hope about the future (because now we believe that there could be a future for me!) and partly from walking so close to the edge, but not going over.  Having approached it, sidled up to it, we’re perhaps more at peace with the possibility of my death, but also hanging on even tighter to my life, and to each other.

Anyway, for now, even in the shadow of the Brink, it feels immeasurably good to be able to be out of bed for a few hours a day, to enjoy the sunshine and fresh air, sit at the kitchen counter, boss people around my kitchen, laugh and eat and talk.  And so far I’m not complaining about wrinkles or starting to take anyone for granted, though I did notice with some alarm that I’m in desperate need of an eyebrow wax.