Category Archives: Living with Breast Cancer

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!

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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.

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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.

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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!

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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.

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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?

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