Tag Archives: treatment

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.

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Lurching Towards a Plan

As I mentioned in my last post, it appears that once you drop out of the realm of standard cancer treatments, the system isn’t designed to support you quite in the same way. I don’t think anyone knows exactly what to do with me.  And it’s extremely unnerving.

This predicament is many-layered and messy, and it has occupied my time and energy for the last several days, but I’m not going to go into a lot of detail for two reasons:

1) I tried to write this post detailing exactly what happened (or didn’t) and it ended up being about 5 million words long, and

2) I don’t understand exactly what happened (or didn’t) and I don’t want to write anything unfair or untrue. 

Suffice to say that as the fog of our initial shock lifted, we surveyed my situation and found that it was a total crash site. We needed a plan — knowing what the next steps would be and who was leading us through them was the key to getting my fear, despair and uncertainty under control. But we didn’t have a plan.  We had a piece of paper with a web address (clinicaltrials.gov) and some search parameters written on it, but no real understanding of what comes next.

Admittedly, we were in shock when we heard the news that my cancer does not respond to standard treatments so it’s possible we were given information that just didn’t register, but we left the clinic without really knowing what to do and the result has been confusion, insecurity and a (possibly misplaced) sense of abandonment. And of course, a little rage.

However, we’ve since made some progress identifying clinical trials and other options, mostly by communicating with my oncologist and enlisting the help of friends, my hospital’s excellent social worker and my very caring and capable family doctor.  I’m blessed with incredibly supportive people in my life who are good at networking and handy with the Internet.  They’ve been researching, calling doctors and other people who might be able to help, and generally just sleuthing around to try to find promising programs and clinical trials that I might be eligible for.  I can’t emphasize enough the importance of having people to advocate on your behalf when your head is spinning and you’re lurching unsteadily between terror, rage and optimism like an emotional bride of Frankenstein on newly cobbled-together legs.

Meanwhile I’ve made some changes where I can – every little thing counts and I decided that if there was going to be a pause in my treatment I may as well use it to detox from all the chemo and try to rebuild my immune system.  Actually, my mother decided that and I agreed since it’s widely acknowledged that there’s no point in disagreeing with my mother when she has decided something.  So I now take about three handfuls of vitamins and supplements a day and have finally and begrudgingly cut back on meat (fois gras is technically poultry,) alcohol (champagne is technically bottled happiness,) and sugar (I cannot be expected to give up chocolate entirely.) 

Plus my friend Todd is a nutrition-fascist with a juicer and a lot of experience with cancer diets, so I spend my days knocking back his crazy cayenne- and tumeric-spiced leafy green/dark berry cancer-killing concoctions.  They’re actually not as bad as they sound, and no, I have not spiked them with vodka. Yet.

In short, things are moving more or less in the direction of action, though I wouldn’t say I have an actual plan since we haven’t yet identified the clinical trial for which I’m going to apply.  

I do have my eye on one promising experimental drug in particular, but there are no trials for it in Toronto, and while we’ve always said that we would find a way to go wherever the right treatment is, right at this minute I have no idea how we would manage to do that, logistically or financially. But I’m trying to just think about things one step at a time, and today’s step is to see what there might be for me in Toronto.  This afternoon we’re meeting with the head of clinical trials at my affiliate hospital to see if we can match one of their current studies to my case. I’m somewhat optimistic – after all it is one of the top five cancer centres in the world – but my approach is to find the clinical trial that has the best chance of pushing this cancer back from whence it came, not to try to find the closest match of the most conveniently located trials available.

So once we have an idea of the most promising studies, wherever they may be, we need an informed review of them all and a fairly quick decision.  Ideally I want to know what treatment I’m starting (and when and where) by the end of this week.  That might sound like a tight turn-around but I’ve got a mean mother of a metastasis taking up a little more real estate in my body every single day and I need to do something about it before the whole neighbourhood goes ghetto. My rib continues to hurt, my cough is much worse, and my breathing is hampered by the pressure of the lymph nodes on my bronchial passageway. This cancer has become symptomatic – I can feel its progress – and quite apart from what that’s doing to me psychologically, it’s wearing me out physically.

I know I need rest and peace, but I won’t be getting either until I have a plan.

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Sayonara Herceptin?

It turns out I didn’t start my new chemo yesterday after all.

Basically the government won’t cover me for any more than the standard course of 17 Herceptin treatments.  The 17 treatments I’ve received to date are worth about 60K USD (and are completely free in Canada) but to go beyond the standard course I would have to show that my disease has not progressed during that time.  It has.  However some lumps have stabilized and my doctor is contesting the CCO’s decision to cut off my Herceptin, but she isn’t hopeful she can get around it (at least not fast enough) so unless my husband’s drug plan covers it, it’s Sayonara Herceptin.

This is not as bad as it sounds.  The new treatment is Lapatinib, which is a targeted therapy for HER-2 positive cancers.  I am a big fan of targeted therapies.  (Say it with me: Apoptosis!)  The only reason my doctor didn’t put me on it first is because she didn’t want to have to take me off Herceptin, knowing it would be hard to get me approved for coverage to go back on it again once I stopped. So she wanted to start me on a chemo that I could have in conjunction with Herceptin, and not a treatment that would replace it. 

I have heard really good things about Lapatinib, and I actually feel ok about this new development.  Like maybe just for once the universe is intervening on my behalf to make sure I get the right treatment (instead of the universe just screwing with me, which is what it seems to have been doing for the past 18 months or so.) I am genuinely optimistic that this treatment will be the one that works. 

On the downside, I’m going TWO full weeks without treatment because none of this will be sorted out until next week.  On the up side I will be in much better shape for the Weekend To End Breast Cancer Walk this weekend, having skipped chemo yesterday.  I’ve raised almost $9000.00!!!

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A Bad Day

It happens.  Well-intentioned people can say the most astonishingly insensitive things; people in possession of big hearts and sound minds can sometimes be devastatingly negative.  Short of punching them in the nose, what do you do?

 

The other day a dear friend said the following to me:

 

“I was talking to a client who has breast cancer and I told her about you and she told me it’s really not good when you get it when you’re young, the chances of surviving are really not good!  And I said, Oh no, why are you telling me this?!?”

 

More to the point, why was she telling me this??

 

Good person, bad judgment. 

 

I tried to brush it off, but the truth is I felt robbed of a lot of the optimism that has carried me through this fight. I just want to walk away from this time of having breast cancer and never look back.  Those words made me feel that I can’t do that.

 

(My mother texted me after I told her this little tale: “I will kill her with my bare hands and pull her tongue out.”  That’s mothers for you – they just rock.)

 

Today when I went in for treatment I asked my oncologist, who very reasonably told me that there are too many variables and factors in each case to make a generalized statement like that; that there are too many different kinds of breast cancer…  That yes, of course I am at greater risk of recurrence (having had breast cancer, having had it travel to my lymph nodes) but that I am being treated “curatively.”  Ultimately she can do a statistical analysis of my particular case, but, she explained, the results are just statistical, and many people prefer not to be given those stats.  Then I asked her whether I could consider having another child if ovarian function returns — she said I need to consider the probability of recurrence when I make that decision.

 

For the first time in a long time, I was a mess today.  The nurses who have treated me for more than a year were surprised to find me in a tearful heap in my giant recliner as they hooked me up to my IV.  Luckily they had pecan pie on hand. 

 

There was no bad news today – if anything my oncologist was reassuring.  I’m just having a bad day.  A bad cancer day.  There are good days and bad days, and this one just isn’t a good one.  But in general, I have far more good ones than bad. And maybe tomorrow will be a good day again.

 

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The New Abnormal

A lot has happened since my diagnosis back in March.

 

I’ve had tests – mammograms, ultrasounds, biopsies, MRIs, scans, x-rays and a few things that involve being injected with a radioactive tracer fluid, just in case I don’t already have cancer. 

 

I’ve had 2 surgeries – a lumpectomy and the removal of several lymph nodes.  I’ve walked around with a drain hanging out from under my arm for several days.  I’ve had a large button-like thing implanted under the skin on my chest with an artificial vein threaded into my jugular to help make being repeatedly injected easier on me.  I’ve had 5 rounds of chemotherapy – today being my fifth.  (Chemo days are milestones marking the progress of my treatment; kind of like little birthdays, except way more frequent and way less fun.)

 

Through all this I have been treated with great kindness and respect by the people responsible for my care.  I’ve had many occasions to be grateful to my team of talented doctors and to the much-maligned health care system that has made my treatment possible, and more importantly, swift.  I’ve also frequently marveled at the incredibly efficient, patient, strong-stomached beings that walk among us called “nurses.”

 

So here I am: bald, scarred-up, and routinely pumped full of poisons.  I have trouble sleeping and sometimes I’m very sick, or in a lot of pain.  This is life with breast cancer. The road can be long, dark, and scary – but on the upside I’ve saved a lot on waxing this summer, acquired a French silk scarf for my head, and met some amazing people.   

 

While not exactly compensating for it, I can see that this curse comes with its blessings.  For me the greatest of these has been watching my family and friends rally around me like a motley army of ferocious angels.  All these people I love have schooled me on what love can do, and it’s a wee bit humbling.

 

As bizarre and difficult as my life has become in many ways, I do manage to forget all about cancer sometimes.  I look in the mirror and see Baldy looking back and I’m surprised for a second that it’s me: that girl with cancer is actually me.  Or maybe more to the point, I’m still me even though I’ve got cancer.

 

That was one of the things that scared me most when I was first told I had breast cancer; I feared that I would lose my identity to it, become That Girl With Cancer. (That, and of course that I’d die.)  My husband and I have a beautiful daughter, a great group of friends, we’re close with our families, and we struggle to balance it all with our busy careers. I liked my life, and I wondered, would all the things that define who I am go the way of my ponytail and ability to keep food down?  

 

But months down the road and here I am.  Of course cancer and treatment have altered my life dramatically.  Sometimes I’m numb, sometimes defiant, sometimes tearful, and sometimes I just keep moving through the moments of my life as though it’s all perfectly normal. 

 

It’s become my new abnormal.  But it’s still my life, and whatever changes have come I still feel like myself.  I may not look the way I used to, but I’m not That Girl With Cancer, I’m still me.  Just balder.

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