Talking About It

My life is still reverberating from the act of talking and writing about the idea of my own death.  Reverberating in a good way.  It feels like something happened to the weight and girth of the subject; like I can get my arms around it and shift it to a more comfortable place, instead of just feeling crushed by it.  When it was just in my head it was menacing and bullying – but when I talked about it with the people I love it turned out that my private hell was not mine alone.  My fears became our shared fears (sorry about that) which allowed us to feel like we could at least face them a little better because we were facing them together.  It was the equivalent of throwing fear in the dryer for a couple of hours: shrinkage ensued.

And then, there we were, my parents and I, sitting on my bed one night talking about it again for maybe the third time in as many days, and not even crying that time.  Or, there I was, dropping it into a conversation almost casually: “…because if I die while Georgia is still really young I want to try to make sure she won’t turn it around and make it her own fault, the way kids think its their fault when their parents get divorced.”  And there I was, yes, blogging about it to the world at large.

(Okay, seriously, blogging about it…  Do you have any idea how naked I felt? It was like streaking through a stadium – although this little world of my blog actually seems far more intimate, so maybe it was more like streaking through a house party.  But, still.  I dare ya.)

It turns out that this unbroachable, unhappy, unfathomable topic is not so totally taboo after all.  I’m not saying I’ll be bandying it about at cocktail parties (“Nice to meet you. I’m afraid my cancer is going to kill me and I won’t get to live out my beautiful little life. Have you tried the stuffed mushrooms?”) I’m just saying it’s more manageable than I thought it would be. And based on the feedback I’m getting, I’m beginning to think that talking about it has possibly made this nightmare a little less nightmarish for everyone else, too. Talking about it means that it’s okay for people to think about it; they’re not betraying me or failing to have enough hope if the idea of losing me enters their minds.

Anyway, it feels like I travelled a long, long way last week, from a place of fear and darkness to a place with at least enough sunlight to keep a small houseplant going.  A huge part of it has to do with identifying a clinical trial and getting a plan for treatment underway. This is undeniably true. But I also attribute the return of my battle-scarred optimism about my chances of living to getting the subject of dying off my chest.

Who knew it would be so liberating?  And can I continue to address it without becoming a freaky goth person?  Because after the initial gruesome confrontation – after the first time I said the words out loud – it became easier and easier to talk about.  Which meant that it was no longer necessary to try not to think about it.  Which meant, paradoxically, that I and those around me thought about it less.

Like my friend Eden pointed out, it’s kind of a relief to be talking about it now when we don’t have to. Better we face it because we choose to and not because it’s being forced upon us.

In other words, I’m not dying – I’m just talking about it.

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Finding Clinical Trials: Tips For Navigating The Void

So anyway, back to being all alarmed and stunned at the gaping chasm in our medical system into which people with cancers that don’t respond to standard treatments fall…

My mom and I were talking about it last night and I was wondering if we are just feeling this incredulous because we’re so emotionally raw and psychologically freaked out.  No, she reminded me, this just isn’t the way it’s done.  Your GP doesn’t tell you to research which antibiotics to take to treat your strep throat. She identifies the best one for you. Yet there is no one anywhere in the system (at least not where I could find them) who’s job it is to research clinical trials on behalf of cancer patients. This is a resource that just doesn’t exist in one of the largest cancer research and care centres in the world, and the implications are frightening. 

It’s true that this is the most unsupported I have felt since that day in March 2008 when I was told I had cancer. But even if the system as a whole has failed me there are many individuals who have not.

I was helped by my oncologist, my family doctor, my family and many friends, the hospital social worker, nurses, and several other people. But none of these people was helping me research clinical trials because it was their job to do so.  It should be somebody’s job. Instead, it was my sister-in-law and some kind women at a breast cancer support organization called Willow  (where she used to work) who eventually found the Montreal study. My sister-in-law. Honest to god, just think about that.  And reach for the barf bag.

So, since I can’t fix the system from my laptop (at least not this afternoon) I think a summary of what we learned in the last couple of weeks is the best, most practical thing I can do for anyone else out there who might encounter a similar nightmarish tumble over the edge of the un-signposted cliff-face of cancer support:

1.   You’re not breaking up with your oncologist.  If your cancer doesn’t respond to standard treatments your oncologist no longer has anything with which to treat you.  However, he/she is still there for you in the following capacities:

  • to discuss ongoing, worsening or new symptoms and test them and try to treat them
  • to connect you with oncologists responsible for any clinical trials available within your hospital network
  • to review any clinical trials you find on your own and vet them for suitability
  • to talk with other doctors, nurses or people on your medical team
  • to process your applications for clinical trials (once you have identified them)

2.   No harm in asking. Remember that the Hippocratic Oath begins, “First, do no harm” – and now proceed to shamelessly use that to your advantage. Even though it is not your oncologist’s job to do it, you can ask him/her to research clinical trials for you. These are busy people, and they are often barely able to keep up with the stuff that falls into their official scope of work, so perhaps they simply can’t make the time to help you.  On the other hand, saying “no” when you know you can help a patient is probably not that easy.  Ask.

3.   Try these on for size, Doc.  It is a good idea to ask doctors what they would do in your shoes.  Once we had a shortlist, I asked my oncologist which clinical trial she would choose, medically speaking (ie: not taking into account geography, financial considerations, etc.) and she told me.  That’s the one we’re pursuing right now.  Many doctors will not be comfortable slipping into your metaphorical shoes, but you know what? Cancer isn’t comfortable.  A good oncologist will at least make an effort.

4.   What’s in it for you?  Many hospitals have clinical trial centres.  The objective at these trial clinics is to populate their studies with suitable patients.  In other words, they aim to match patients to the studies that they have,  and NOT to find the best possible clinical trial for a patient from all available clinical trials. They are only working with the trials that they currently have underway at their own clinic and they will select the trial most suitable for a patient from among those trials. Your job as a patient is to find out if participating in the trial offered will bring any real benefit to you (see Phase Matters, below.)

5.   Phase matters.  Trial Phases are important.  This is what I learned about them:

Phase 1

  • Phase 1 trials are for drugs or combinations of drugs that have had good lab results and are now being tested on humans. 
  • Phase 1 trials are designed to establish the correct and safe dose of the drug(s).  This is done with groups of patients – the early groups get a lower dose, and later groups get a higher dose.  If you get a low dose and it doesn’t affect your cancer you do NOT graduate to a higher dose; you are removed from the study.
  • Phase 1 trials are effective against cancers in ONLY APPROXIMATELY 10-15% of cases. Personally, I don’t like those odds.

Phase 2

  • In Phase 2 the dose has been established and the study is concerned with something called pharmacokinetics – how the drug is absorbed, processed and eliminated.  Basically it’s all about figuring out what the side effects are.
  • If you find a Phase 2 study, it has been effective enough in Phase 1 to graduate to the next level.  Meaning it has worked at least enough to warrant more money being spent on it.

Phase 3

  • Phase 3 studies are the final phase of testing before a drug goes to market.  Essentially, the dose and side effects are established and now it’s about ironing out the kinks before lots of money will spent on marketing the drugs to hospitals as standard treatment. And you just know they don’t spend money on stuff unless it’s going to work for a lot of people.
  • Phase 3 studies often involve multiple lines of treatment, meaning they are testing combinations of drugs to see how they work together. From a layman’s point of view, I like the idea of more drugs.  Just say YES, YES, YES.

6.   Take a number. Unfortunately it can take several weeks between identifying and beginning a clinical trial.  In general, 4 weeks must have elapsed since your last treatment and you must meet a litany of study-specific criteria.  You must also provide bloodwork, and other tests like CT scans, ECGs, MUGAs, etc.  The study will also want to access your records and archival tissues.  The good news? You can apply to multiple clinical trials at once, so that if one gets held up you at least have the option of beginning another. But cross-reference the eligibility requirements carefully (especially for specific drugs) to ensure that participation in any one study will not make you ineligible for another study.

7.   Everyone wants a piece of you.  If you apply to multiple studies simultaneously be aware that they may all try to access your archival tumour slides at the same time. These are samples of your disease cells that the hospital preserved at the time of biopsy and/or surgery – and your samples may be limited.  You must be sure that you communicate to the archivist which study gets priority access, otherwise the one you really want to get into may be bumped by your back-up clinical trial just because the latter got there first.

8.   Help, I need somebody.  The research, the meetings, the phone calls, the follow-up, logistics, financial considerations, psychological implications, and oh by the way you’re supposed to be resting and rebuilding your immune system…  It’s so frigging overwhelming.  You can’t do it alone, and you don’t have to.  I don’t care what your circumstances are, You. Are. Not. Alone.  For one thing, if you’re reading this you have access to the internet, which means access to other people.  Help is out there.  Just contact your hospital social worker, or the Canadian Cancer Society, or one of your local cancer support agencies. They can help you find someone to advocate for you, support you, talk you through it – whatever you need.  The nice thing about being hit with the cancer stick (the “nice” thing? did I just write that??) is that there is a LOT of support out there for us. 

9.   Smashing things works. I never knew how good it felt to get mad and break things, especially when it feels like there is literally nothing else you can do. I highly recommend you get yourself a Rage Box.   

 

I’m sure I’ve missed some things but that’s all for now.  This is the part where the resting and the rebuilding of the immune system happens: I’m taking a nap.

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Found: A Clinical Trial! Also Found: Glimmer of Hope

Torturous as yesterday’s post was to write, I had to do it. Thanks to everyone who managed to pluck up the courage to reply to the unrepliable with comments and e-mails.  Apologies to everyone who felt paralytic or overwhelmed (I think that’s all of us) but this was only ever going to be a very bumpy ride. Lifejacket is under the seat and there’s a barf bag in the seat pocket in front of you – let’s hope we don’t need them too often.

For the moment, the sun is actually beginning to emerge from behind the dark clouds for a change: we have found and are applying for a clinical trial at last!  The study sounds promising — the most promising of all the experimental drug trials we were able to find — and there is a study site in Montreal, which isn’t totally ideal, but it could be worse, it could be much farther from home.  It could be outside Canada.  I’m not sure how swift the enrolment process will be or how we are going to handle the financials or logistics, but I’m already feeling so much better and more hopeful just knowing that there is a plan underway at last. 

It’s amazing how much difference a little glimmer of sunlight can make.  We are going to be doing something.  And it might actually work!!

Unfortunately, getting to this point has been excruciating and, as anyone who read yesterday’s post can attest, the process has forced me to face the grimmest realities.  Among them, and second in grimness only to confronting my own mortality, was the realization that our medical system completely fails in its support of patients with cancers that don’t respond to standard treatment.  

The transition from a supportive, comprehensive cancer-care system to the bleak no-man’s-land of post-standard-treatment was so sudden and jarring that it took me a while to realize that I had in fact been left to my own defenses.  Apparently the system just isn’t designed to take you any further than approved drugs and standard treatments, so if you have to go the non-standard route, you have to navigate it yourself. 

Meaning it is up to the patient to research and choose her own clinical trial.  The patient, who in the majority of cases does not have a medical degree.  The patient, who is reeling from the news that there are no more treatments for her.  The patient, who is probably grappling with gigantic questions like “Am I going to die?”  The patient, who hopefully speaks English fluently, knows her own medical history intimately and is handy with the Internet.

Aside from the basic impracticalities of this situation, it has the psychological effect of leaving the patient out in the cold.  It sends a message of hopelessness.  It says: your cancer is so bad, we’ve given up.

I believe I wasn’t totally abandoned only because I and my family reached out repeatedly for help to my oncologist, the hospital social worker, my amazing family doctor, a clinical trials nurse, and many, many other people.  I’m deeply grateful to all of them for their help, but I’m still stunned and alarmed at the totally unacceptable failure of a system I believed in and trusted with my life. 

But enough about all that for now. Really, I can be all stunned and alarmed later.  Right now I just want to enjoy the sunshine.

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Am I Going To Die?

It used to come mostly at night, but lately it’s had the audacity to creep in even in bright sunshine. I’ll be going about my business when I get a sudden flutter in my belly, a lump in my throat. Silent flashes of anxiety. Brief, lightning-clear moments of reckoning: My god, is this really happening to me? Something shifts. Everything around me takes on a slightly unreal aspect, becomes slightly less solid. Fear is on the threshold. Don’t think it, don’t let it in. Everything I see is coloured by it; it settles over every surface like a layer of poisonous dust. Everything I do and say, every move I make stirs it up, unsettles it, thickens the atmosphere with it so I can’t ignore it anymore. 

Am I going to die?

Sometimes, by the time I am in bed at night, and the house is quiet, I can barely breathe. Please please make it stop take the cancer away that’s enough now please just let me have my body back my life back let me live…  I try to distract myself, push it down, meditate away from it. Then I let it come, cry, try not to go crazy. My husband holds me in his arms and kisses my hair and wipes my tears away with a corner of the duvet as the Ativan melts under my tongue. Slowly my breathing steadies.  My heart stops pounding so fast. I’m exhausted now and my body will sleep, its only true refuge from the fear.

But it will be back, again and again. No matter how good my good days.  No matter how angry my anger.  The fear keeps coming back.  Am I going to die?

How can it not come back?  How can anyone around me, or anyone who reads this blog, pretend they haven’t gone there in their heads, asked the same question? Let’s admit it. Let’s not pretend that we don’t occasionally get stopped in our raging, planning, hoping, fighting tracks by the thought that this cancer might just kill me, and much sooner than we’d ever imagined.

The thing is, it can feel like even admitting to the fear – admitting that I wonder if this is going to kill me (meaning kill me soon) – is somehow giving up. But I’m not giving up.  I’m not. I won’t, I promise.  I feel like I have to be very clear about that because the theory goes that if you get it in your head that this thing is going to beat you then it does and you die.

I’m not entirely convinced of the truth of that theory – and I certainly don’t think it’s fair to deny someone the right to confront their own fears of death on the basis that thinking about it makes it come true – but in case the people who love me believe it, I’m telling you all now: I’m not quitting.  There’s a difference between letting myself consider the possibility that I might die and calling it quits. 

What I want is to face the fear and then send it back down into the reeking depths from which it comes.  But facing it is such a tall order!  When I admit to myself that yes, this cancer could kill me, the first thing I think of is how hard that would be on my husband, my mom, dad, brother, family, friends, and yes (insert knife into heart here) my little girl. Causing every single person I love pain and loss and sadness is just about the worst fate I can imagine. It makes me feel helplessness and sorrow on a level that is almost physically painful.

That’s the number one reason thinking about my own death sucks – because of how I imagine it would hurt the people I love.

I actually don’t think I’m afraid of death itself. Pain and suffering, yes (definitely, unequivocally.)  But death?  Everyone is going to die.  We know this.  We just can’t wrap our heads around it. It’s hard to be afraid of something you can’t wrap your head around. It’s just too big a concept, just too miraculous and natural and kind of peaceful to actually be scary in and of itself.

What is scary and awful is the idea of the departure gate: saying goodbye to everyone and everything I love.  And it’s less scary than it is just plain awful.  Especially if it’s preceded by suffering and making everyone around you watch helplessly, knowing that they’ll just endure a whole new kind of suffering when you eventually do die… Ugh. Now that’s torment.

So why think about it?  And why, for the love of god, torture everyone by writing about it?

Because it is unfortunately part of my reality now, and if I don’t think about it or talk and write about it, it will drive me crazy.  Like wandering around grocery stores in bare feet and pajamas crazy.  Like putting vegetable soup in the washing machine crazy.  Crazy crazy. Certifiable.

Trying to avoid thinking about it or talking about it just makes it worse.  It makes me feel more isolated, which in turn makes me feel more afraid.

So I’m for tackling this topic head-on and not side-stepping any harsh realities of my so-far untreatable extremely aggressive life-threatening jerkface cancer.  Which means that lately I’ve been saying out loud to the people closest to me “I’m afraid I’m going to die.” 

These are not easy conversations to have, not only because it’s really frigging difficult to talk when we’re crying and blowing our noses so much, but also because there’s not a lot to say about it.  Of course we have all thought about it.  We don’t like to think about it, and we want to believe that I will recover and live a long, healthy life – which I plan to do – but the thought that I might die has crossed our minds, all of us.  

I’m just asking that we let the fear come, look it in its beady little eyes as best we can, and allow ourselves to cry about it, acknowledge it, be angry about it – whatever – just as long as we don’t try to ignore it.  

Somehow I believe I can make the idea of dying just a little less terrorizing if I let myself get familiar with it.  If I can do this I believe that fear won’t colour everything, that it won’t always be lurking and looming, and I might be able to slip out of its grip and move away from it, toward other thoughts. I might actually get to enjoy my life fully, and be completely engrossed in all the things about it that make me want to live it for a long, long time.

At the very least, when I’m with the people I love, fear shouldn’t be allowed to pull up a chair and sit at the table with us, scratching its belly and belching in our faces as we all try furiously to ignore it.  If it shows up we can say, “We see you.  You’re ugly and you stink.  Now get out of here.”

If we’re going to sometimes be afraid, at least we can be afraid together. I want for it to be okay to talk about death as just one of the possibilities because it is one of the possibilities and if I don’t face it, it’s going to make me crazy. It is.  But we can also spend a lot of time talking about the other possibilities too, like beating this thing, finding the unconventional treatment that actually works for unconventional me, and imagining together those happy days in the future when I bore everyone who comes within hearing range with the story that ends with the line “…and then the doctors said, We don’t know exactly what happened, but the cancer is just GONE.”

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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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Smashing

If the seven stages of grieving are anything like the seven stages of getting spectacularly grim news about your cancer, then I’m right on schedule:  I am no longer drowning in despair or frozen in shock, but am awash in the turbulent waters of anger.

This is good because it turns out that the upward climb from the bottom of the abyss is steeper and slipperier than at first it looked, and I was starting to slide back down a bit into the darkness of fear and despair.

But then yesterday I got mad.  Figuring out what my next step in fighting this cancer is supposed to be has been incredibly difficult and intimidating and I was feeling frustrated, frightened and unshepherded as I tried to navigate the clinical trial quagmire. And then, just when I was on the verge of crumpling into a heap of hopelessness, my fear and frustration transmogrified into a clear, burning rage.  It was like a blinding spotlight aimed squarely at a system that seems ill-equipped to support a person facing this more-desperate-than-average cancer flummox, and at a disease that targets mothers, fathers, best friends, and daughters instead of just taking out monsters like child molesters and corrupt politicians.

To my surprise I found myself smashing my fist down on the kitchen counter.  I did this about five times.  Then I did it about ten more times.  It may have looked a little silly but it sure felt better than collapsing into tears and being overcome with fear and frustration. I suddenly understood why men kick things when they’re mad, especially things they have just stubbed their toes on. The fist-pounding made me feel less vulnerable, somehow stronger.  Also a tiny bit cro-magnon. And then it started to hurt, so I considered kicking in some drywall, mentally appraising all the walls in our house for smashibility, and wondering if we had an axe…

Next, I had several very clear premonitions of spending the afternoon with blood-soaked towels tied around my limbs while waiting to get stitched up in emerg. Maybe the axe is not such a good option for me.

That’s when I remembered the “Rage Box” that my friend Karen made me.  It is a cardboard box in the garage filled with old chipped cups wrapped in newspaper.  The instructions read as follows: 

1) Place in area where things that break can be thrown. Preferably somewhere that you won’t have to clean up because who the hell wants to do that?

2) Start to feel the rage… run to box, grab mug, throw against floor, SCREAM!

3) Repeat as often as necessary.

4) Call when you need a refill.

I smashed everything in the box out in our back laneway (but did not scream so as to avoid neighbours calling police.)  I smashed some of them twice if they still looked smashable after the first smash. And my god it felt good.  I have already requested a refill for the rage box.

Look out cancer, I’ve just discovered rage, and I like it.

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Thank-you

At first when I began reading the comments to my last post (and getting e-mails and messages) I felt the comfort of it as something faintly glowing in the darkness, like an electric heater in an abyss. Then the compassion and kindness actually started to envelop me.  Now I’m kind of engulfed – but in warmth, not flames.

I’m frankly awed by so much raw emotion and all that big-heartedness coming at me from who knows how many different directions; everything converging in a place so full of empathy and love it’s humbling to find myself at the centre of it. Humbling and overwhelmingly comforting. It’s a strange sensation, watching a phenomenon of humanity at its best and then realizing you’re a part of it. I feel completely blessed, as blessed as someone with no religion and too much cancer could ever possibly feel. You all helped me to open at least one tightly shut eye and consider unfolding myself from the fetal position while I was free-falling into darkness, and for that I am hugely, immensely grateful.

Becasue it was quite a fall. I fell so swiftly into that darkness that I think I hit the bottom not with a splat so much as a bounce. Which would explain why I have the sensation that I’m already coming back up from the depths of despair. Not with anything near the same velocity as that with which I fell mind you, but the velocity is not the point, it’s the direction that counts: up.  

Along with reading your comments and e-mails and texts, I did some other things to help propel myself upwards: went to a salon and got my blonde hair back, escaped the city with my little family, ate chicken pot pie, drank champagne, and began formulating a plan of action…  It seems to be working.  I’m not falling anymore, I’m climbing back up. Slowly, stumbling, and in tatters perhaps, but up nonetheless.

And importantly, up or down, it’s been made absolutely clear to me that I’m not going anywhere all alone. So, if you’re coming with me, buckle up – this part could get a little bumpy.

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Hardest Day

First the good news: Although all CT scan results are not yet in, so far there is no evidence of metastasis in the bones.  It could very well be that the rib I cracked this morning (with one big hearty cough-sneeze combo at breakfast) is just a “cough fracture.” But it hurts like hell, so you’ll forgive me if I’m a little stoned on pain medication as I write this.

And now the bad news…in fact the worst news we have received since my diagnosis almost 2 years ago:

The nodules in the lungs have grown and while some lymph nodes have shrunk, some have enlarged and there are new ones in the space between my lungs.  All of this means that it is official: my cancer does not respond to standard chemotherapies. Actually they’ve tried all but one, and they’re holding that in reserve for now. Better I try some experimental treatments, they say.  Better we find a clinical trial, they say, though they don’t have one in particular in mind right now.

I am simply devastated.  I feel desperate and frightened and angry. Nothing has been able to stop this cancer, and I fear that nothing will. I feel mystified – utterly and completely – by the idea that something so ferocious has made me its target. I am simultaneously on the kitchen floor, under the duvet and wandering around disoriented and underdressed in the blizzard.

There have been a lot of tears today – a lot. My husband and I have instinctively been no further than a few feet apart at any time since receiving the news, as if we are afraid that this cancer well and truly means to separate us. The invisible tentacles of my parents, my family, and my friends have reached out through phone calls, texts, e-mails and general vibes of love, weaving a kind of blanket of collective protection around me. And my daughter?  Oh, my baby.  That’s the hardest of all.  I can’t even look at her without thinking, I just want to see you grow.

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Ice Picks

I had a call from my oncologist’s office: I need to come in tomorrow to talk about the test results.  That means the CT scan results were turned around very quickly… and it doesn’t bode well that we need to meet immediately to discuss the results. 

I’m doing everything I can to hold it together – especially since Georgia is home with me today – but basically I’m a mess.  Axel came home during Georgia’s nap time and found me upstairs, lying on our bed.  He just put his arms around me and told me he loves me.  He had to go back to work, and now I can hear that Georgia is awake, so I have to snap out of this paralysis and back into life with my little girl, but I feel like I’m in a trance watching someone on the outside go through the motions while on the inside I’m frozen in fear.

Keep those ice picks handy.

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The Storm

There is a big storm here today – a blizzard.  The snow keeps coming down and piling up, traffic slides and crawls, and on the sidewalks people bend forward and stumble into the horizontal blast of a Canadian winter reminding everyone who’s boss.

I’m feeling a little like the cancer is showing me who’s boss today.  Not physically, but by virtue of it kicking the ass of my optimism.  The fear that the cancer might have spread to my bones or further colonized my lungs is coming down and piling up.  I’m trying to navigate it but I keep sliding and stumbling. I dread the CT scan tomorrow because I dread the results.  

I’ve had a stormy day – torrents of tears, bolts of anger, clouds of despair.  A darkness of helplessness and a heaviness of frustration and a hail-storm of anxieties. You name it, it came crashing down. Luckily I had a session with my cancer shrink scheduled for today, but the best I could do was plow through a box of Kleenex asking, “Why can’t anyone stop it? Why can’t anyone fix it?” The pathetic futility of my questions only set me further adrift, and he had his work cut out for him just to bring me back to a basic acceptance of the anger and fear.

Of course, I know that the CT scan could possibly tell me that the cancer has stabilized, or even started to shrink.  After all, my neck lumps have disappeared.  (Is that a glimmer of sunlight I see?)

But like a Pavlovian dog, I’ve been conditioned to expect bad news each and every time they scan my body. Last time, even though my lymph nodes had stabilized, my lungs showed evidence of progression. (Nope, just more storm clouds.)

The coughing and the pain in my ribs make me even more fearful; maybe these are symptoms that the cancer has further spread.  Like walking out into a blizzard with nothing but a light jacket and city boots, my trusty tools Denial and Distraction aren’t offering me much protection in these conditions.

There are many hours in the day when I am functioning and managing as though everything is okay – or going to be.  But underneath is always a growing sense of foreboding. And also no small amount of anger that I have to feel this way – this afraid – again.

Yes, I know what this is: classic fear of the unknown. Thank-you Dr. Freud. But let’s not go so far as to say it’s “just” fear.  I am aware it’s not bad news yet and it may never be bad news, but that’s only my reason trying to wrestle with my emotion. Sometimes emotion wins.  This is one of those times.

I’m writing this while I’m still in the darkness.  I could have waited until I was in a brighter place, feeling less fragile, but what would be the point of that?  In a way, the act of sharing this fear does shrink it, if only a little. If I think about how many people might be out there reading this – how many different portions my fear might be divided into – it somehow feels a little better, a bit more manageable.  When I read the comments it’s like they take little chips out of the icy wall of fear, like they help take the cancer down a notch. Like I get a little bit bigger, just a little less vulnerable. 

I don’t know what the name is for that unscientific phenomenon, I only know it’s true.  It’s a small shelter from the storm, but it’s a shelter nonetheless.

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