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!

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.

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.

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.

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.

Just As Likely

My blood counts were once again too low for treatment today.  This is a little disconcerting, a little frustrating – but I understand that it’s not the end of the world.  This chemo is serious stuff and my body needs to recuperate a bit.

What was more than a little disconcerting was all the conjecture today about my back pain. When I told the nurses about it they said that maybe I’d cracked a rib, but reassured me that it didn’t mean anything, that this can happen to people who cough a lot.  However, I needed to be seen by a doctor and since my oncologist wasn’t there, I met with a resident.  I explained the whole pain-when-I-cough scenario and he, like the nurses, said it was likely a fractured rib. 

Here’s where it gets troublesome:  I asked if fracturing a rib was fairly normal with a serious cough or whether it means that the cancer has likely spread to my bones.  He didn’t even pause before saying “Yes, it’s likely that it has spread and I would expect your bone density is low.”

Okay, here’s a tip for all you up-and-coming oncologists out there:  your words are powerful – wield them with caution. You are not a mechanic, the patient is not the driver of a malfunctioning vehicle. You’re a doctor and this is my body, my life we’re talking about. If you are going to tell someone with metastasized disease that it may have further spread – in other words that the treatment isn’t working and things are getting worse – consider that this information might have emotional consequences.  Consider that it might freak the patient out a bit.  Don’t just throw it out there like you’re talking about a carburetor or a transmission that blew, because it’s not a car, it’s a human being and there are emotions attached to that carburetor; there are questions of mortality attached to that transmission.

Seriously. I was shocked. I immediately began processing the implications of yet another treatment not being able to stop this cancer. Tears started to pool in my eyes and I had to focus on breathing so that I wouldn’t suffocate from the g-force of fear pressing down on me.  The doctor began looking extremely confused and stressed out about my tears.  At the same time, my mother seemed to rise from her chair and materialize protectively at my side in far less time than it is humanly possible to cross a room.  Also, she had somehow procured a box of Kleenex enroute.

But then the voice of reason kicked in.  It said: Check out the look of horror on his face. Does this guy even know what he just said? So I dug deeper.

I asked what else could be causing the pain, whether it was possible that I haven’t cracked a rib at all, that I just pulled something?  He said it was just as likely.

Just. As. Likely.

A bruised rib or pulled muscle is not an indication of disease progression. I had to resist simultaneous urges to hug him and smack him in the head. I even managed not to shout What’s wrong with you? Why didn’t you say so in the first place?

The pools in my eyes began to evaporate and the weight of the air was suddenly more bearable.  In other words, fear left the room.  It didn’t leave the building – in fact it has maintained a respectful following distance all day – but at least it’s not sitting on my lap anymore.

Dr. Still a Little Inexperienced (Let’s call him Dr. SiLI for short) and I decided that an x-ray today would reveal either a fracture or potentially indicate other possible causes of the pain.  He would call me with the results.  Of course the CT scan on Tuesday will tell us much more, but I pointed out that waiting approximately ten days from now for those results would not be psychologically ideal for me.

Then Dr. SiLI examined me.  (Not a bad idea, since after all he’s a doctor and I’m a patient with a complaint of physical pain.)  He listened and tapped and prodded and poked around looking for the supposedly cracked rib, asking, “Is it here?  Here?” while I replied, “Um, I don’t know… maybe up a little…” and ultimately resorted to coughing in order to locate the pain.  Then, when he pressed it, I didn’t yelp or jolt my body away — in fact it felt kind of good, like a massage.  This I take to be a good sign, because the only time I ever officially fractured a bone you couldn’t even look at it too closely without causing me pain.

So Dr. SiLI gave me a ‘script for the pain & sent me for an x-ray, and then my mom and I left the hospital and did what any normal people would do after such a roller-coaster of a morning: we went to the movies.

And here I am a few hours later, eating vanilla ice-cream right from the tub as I transcribe the drama of the day from the safe distance of a few hours spent with George Clooney. And you know what?  I’m actually thinking how far I have come in this role of Person With Cancer.  It wasn’t so long ago that I would have staggered out of the doctor’s office in a state of shock and trauma, without the experience or presence of mind to stop the panic, dig deeper, and question further.  The doctor’s first comment would have immediately convinced me that the disease has spread to my bones – and who knows, maybe it has. But it’s just as likely that it hasn’t. Just as likely.

Those three words don’t get me any closer to knowing the facts, but they are enough for now.  And I know fear is still camped outside my front door, but I’m not sharing my ice-cream.

The Plot Sickens

Apologies about that mysterious reference to “developments in development” – I was waiting to speak to my doctor, and now that I know what is going on and have shared it with family, I can finally blog about it.  Basically, the nodules in my lungs have turned out to be metastasized breast cancer.  

This means that somehow, in spite of the lymph nodes shrinking and stabilizing, the spots in my lungs managed to multiply and grow larger.  Those very same spots I saw on the CT scan in the solar system of my lungs – those tiny little flecks indistinguishable from all the other tiny little “normal” flecks – are in fact gigantically evil.

We were devastated and enraged when we heard the news, especially after having felt so buoyed by the stabilization and shrinkage of my lymph nodes.  I did a lot of crying, and a lot of raging this past weekend; a lot of fantasizing about smashing things (windows, pieces of furniture, cancer cells…) and a lot of asking the universe if it couldn’t have just cut me a little slack for once?  Really, how much hope-bashing is allowed?  How many bounce-backs do I have to make? 

But, after having to gone to some very dark and scary places, I was surprised to find that I could come back from them again.  I resurfaced.  Once again, the will to live my life and beat this thing has prevailed over the fear that it will beat me and take my life. Or prevailed for now; it’s a bumpy ride, I’m bound to fall off the hope wagon from time to time.

What helped enormously was having a long talk with my oncologist yesterday.  Apparently it is unusual that some areas would respond to treatment while others do not (of course I have to be special.)  However, it is not at all unusual that the cancer would affect multiple organs.  It is also not unusual for people live years and years and years just firing at the moving target of metastasis.  Years and years and years.  So, looks like I should continue to look both ways when I cross the street and keep wearing my bike helmet.

My oncologist’s recommendation is that we change course of treatment immediately to something that might be more effective in hitting ALL areas of activity, because she is especially concerned that I don’t become too symptomatic in the lungs, since it’s not fun to be gasping for breath and this cough is already super-annoying.

So my new treatment is a combination of drugs called gemcitabine and cisplatin, administered through IV in the chemo clinic, starting tomorrow. Off the pills and back into the veins! Actually, I’m kind of ready to abandon my current side effects and try out some new ones.  I’ve been told to expect nausea and tingling hands, but with any luck my bad dream about losing my hair won’t come true — my oncologist says there could be “some mild hair thinning or loss.” Sounds a bit patchy to me, but we’ll see.

In the mean time, onward. On Friday my friend Chris wrote me an e-mail and in it he said “The universe loves you.”  I really need to believe he’s right.  I just wish it wasn’t such tough love.

Don’t Look at Me Like That

I have noticed, ever since the cancer began colonizing other territories in my body and the M-word became affixed to my C-word, that I am sometimes treated just a little bit differently than before.  It’s subtle — like an almost imperceptible shift in barometric pressure — but it’s definitely not my imagination.  Of course people don’t actually gasp or recoil, but sometimes they get all somber and earnest, imploring me to stay as positive as possible and to believe in miracles. Wouldn’t that make you feel, I don’t know, a little weird?  A little paranoid maybe?

This doesn’t just happen with the insensitive or uninitiated. I get bumped to the front of the line for visits to the cancer shrink at the breast clinic, which is great, but I have to wonder why I’m being treated like cancer royalty all of a sudden. 

And there are other, more alienating experiences: I was being screened for a breast cancer support group for mothers of young children and it turns out I can’t be included because of the metastasis.  As they very cautiously explained, none of the other mothers have metastatic disease and group dynamics can be “delicate.”  In other words… what? My presence might freak others out because they’ll project my presumably horrible fate onto their own experience?  Or I might jump up and tell people that they don’t know from scary? Really, what??  I do understand that it is always better to have a population of people with similar experiences in these kinds of groups.  But still, it made me feel like I had unwittingly morphed into a different species entirely.    

These things, subtle though they may be, all contribute to the feeling that something (besides the cancer) has changed or shifted since my disease metastasized. Like I’m becoming faintly translucent in bright light, or something. And I don’t like it, not one bit. 

All cancer is crap, and the sneaky, shape-shifting, nomadic nature of metastatic disease makes it extra crappy.  But even though my cancer hasn’t exactly been responding well to treatment so far, I know I’m going to beat it.  They say it is “not curable,” only treatable, to which I say, bollocks.  Of course it’s curable.  They are coming up with newer and cooler ways in which to smash metastatic disease until it’s finally crushed, once and for all, like a nasty and unworthy insect under the 4-inch heel of my cancer-defying awesomeness.

However, until that happy comic-book ending comes to pass (and it will) I have to live with metastatic breast cancer. I know I have a serious form of cancer and that, because it’s on the move, I have to fight it constantly and indefinitely. I accept that I sometimes need help with things I used to be able to manage myself. I freely admit that I get really scared sometimes (mostly at night) and I have to chase the boogeyman away and regroup.  These things are all true. I’m not in denial.

But I want to strike a deal with the world at large:  Please don’t stop with all the help and prayers and good thoughts and love and certainly not with the soup. Please keep encouraging me and supporting me and telling me I’m courageous, because it actually helps me to be courageous. And please, don’t look at me like I’m going anywhere anytime soon.  Even if you think I’m delusional (I’m not) and I’m not going to live (you’re wrong) I ask that you suck it up and fake your way through the most convincingly positive attitude you can muster. Use the Stanislavsky method. Whatever.  Just don’t let me catch you looking at me like it’s only a matter of time, because if I’m supposed to believe that I can get through this (and I do) it helps if everyone around me believes it too.  Or at least acts like they believe it.

Besides, for whom isn’t it only a matter of time?

A Cancer Primer

A friend of mine recently told me that when I talk about cancer, she gets a little lost in all the medical terminology and references to different kinds of treatments.  It’s a slippery slope, and I can see now that I have slid it. To make amends for my spouting of esoteric mumbo jumbo, herewith, a Cancer Primer:

 

Cancer Strong contender for Most Terrifying Word in the English language; also known as the C-Word, the Darth Vadar of disease, and “the little word with the big stink.”  Meaning: A disease that involves abnormal or uncontrolled cell division.  Basically your good cells get overtaken and/or crowded out by bad cells.  This doesn’t happen because you did something wrong, no matter what anyone including that nasty little voice in your head tries to tell you.

Metastatic Breast Cancer (Also, “mets” in cancer-lingo.) The scary, hairy, foul-breathed boogeyman of breast cancer. It means your breast cancer has spread to other parts of your body. But it is still called “breast cancer” no matter where it goes (bones, organs, lymph nodes…) Imagine you are Turkish, and you visit Newfoundland for some whale watching or, God forbid, turbot-fishing. You are still Turkish.  You are not considered Canadian just because you came to Canada for the fish.  OK, so perhaps this analogy is a bit obscure.  What I’m saying is, it’s not that your breasts have travelled to your liver, but that the invading cells are the offspring of the original trouble-makers. When this happens, they just add the M-Word to the C-Word and voila! Your C-Word gets cranked up a few stages (see “Staging” below.)

Biopsy This is when they physically extract suspicious cells from your body and send them to a lab for questioning under a microscope. They have lots of different kinds of biopsies, some of which are less unpleasant than others, but eventually you’ll get an answer. Oh yes, you’ll talk, little cells… You’ll sing like little cancerous canaries…

Pathology  The specific nature of your disease as defined by the characteristics of your cancer cells.  Some breast cancers are related to hormones, some are not; some breast cancer cells have certain proteins on them, others do not.  The lab identifies exactly what the cells are made of so the oncologists know whether to use the medical equivalent of numchucks or molotov cocktails.  All breast cancer cells are stupid jerks, you don’t need a microscope to see that.

Radiation I think everyone has a basic idea of what happens with radiation – you nuke the cancer.  In a localized, laser-beam sort of way. Check out “radiation” in the tags for more details.

Chemotherapy Ah, notorious chemo: the bald-making, sick-making, cancer-killing drug therapy. Actually, not all chemotherapies make you bald and many are much improved in the sick-making department too. They’ve come a long way, baby.  And they’re not all administered by IV drip, either – some (like my capecitabine) are pills.  Think of chemo like an army that goes in and wipes out everything good along with everything bad, with the intention of rebuilding the good stuff later (this usually works better in chemotherapy than in Bush Administration foreign policy.) The somewhat arbitrary attack plan explains hair loss; if chemo drugs are designed to attack fast-reproducing cells – like cancer cells – they’ll knock out hair cells too. Hair loss can be an incredibly devastating, psychologically debilitating, massive downer. You look in the mirror and see “cancer” looking back.  On the upside, people will give you their seat on the bus and eventually, the hair grows back. 

Targeted Therapies These newer cancer treatments are less arbitrary than chemo, and more targeted to the specific cellular stuff happening with certain cancers. For example, they may work in conjunction with chemotherapy to deliver the toxic drugs directly to the cancer cells (smart-bombing) or they may be designed to prevent the tumour from developing the blood vessels it needs to feed itself and grow.  Let’s all just take a moment here and be collectively creeped out that tumours develop blood vessels and feed themselves.  Seriously. It’s gross. It’s like something from a Ridley Scott movie.

Staging This is when they measure your cancer and kind of rank how bad it is.  Not that anyone ever says “it’s somewhat bad,” or “it’s extremely bad.” They will just talk about how much it has spread, how big the tumour is, where it is in proximity to organs, etc.  Stage 0 cancer is called “in situ” and means it hasn’t moved one little bit, and Stage IV is the big M.  People sometimes also talk about “high grade” and “low grade” cancer. This is another measure of the likelihood of the cancer to move around or otherwise become a greater pain in the a**.  In addition, you’ll hear about things like “triple positive” or “double negative” cancers – this isn’t a measure of the extent of the cancer but of its nature (estrogen, progesterone or HER-2 positive or negative) so don’t let it freak you out.  

There are many more terms in the cancer lexicon – far, far too many – but that, I think, is enough cancer talk for one day.