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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Return From the Brink

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

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

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

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

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

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

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

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

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

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

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Dr. Detroit!

We love Detroit!

Well, maybe not the urban wasteland / don’t-take-a-wrong-turn-sucka city proper – but we definitely love the gleaming, amazing Karmanos Cancer Center, stuck incongruously in the heart of it.  And we especially love the brilliant clinical trial leader there, who shall hereafter be referred to as Dr. Detroit.

Dr. Detroit is world-renowned for her work in testing new cancer drugs. She’s been at Karmanos for 21 years and in that time has brought so many important anti-cancer drugs to market that she’s become a bit of a cancer legend.  In person, she’s a thorough, straight-talking, personable, smart, get-it-done whirlwind of a woman – but what we liked best is that she seems completely unafraid to give us hope.  Specifically, hope that this drug will work for me. Hope that I might live.  She did it in part by saying that for HER2+ cancer, TDM1 is the best drug she has ever worked with. 

This is the first time we can remember sitting in the presence of an oncologist who will use a word stronger than “interesting” to describe a trial drug and its potential benefit.  And frankly, I really would like a drug to do more than “interest” me, especially if we are going to have to travel several hundred miles every week and raise several tens of thousands of dollars to get it.

Anyway, there we were, listening to Dr. Detroit and feeling the unfamiliar buoyancy of hope for the first time in forever. Amazingly, I was also feeling more energetic than I had in weeks, which was unexpected, especially after the long drive Wednesday (we’ll be taking the train next time.) In fact I’d been totally exhausted when we checked into our room on the hospital campus the evening before, and had a low fever as I got into a hot bath while my husband went out to forage for food.  (Let’s just note here that driving around downtown Detroit after dark with Ontario plates and no idea where he’s going is not what I would describe as typical of his intelligence and good judgment, but he did make it back in one piece.) By the time he came back, I was feeling better, sitting up reading in bed, and he remarked that I had colour in my cheeks again and wasn’t coughing continuously.  “I don’t want to jinx anything,” he said, “But do you think the chemo could already be working?”

In the morning, I was even better.  Neither of us could believe that I was able to walk across the hospital grounds to the clinic, and then sit, eat, talk, and just generally function at an almost normal level.  It was a surprise to both of us; hard to believe I was the same woman who, four days earlier, couldn’t get out of bed to get a glass of water. Mind you, four weeks earlier I could go for long walks and chase pigeons through the park with my kid…  Anyway, we were just happy that I didn’t seem quite so ready for the Final Curtain anymore.

So when Dr. Detroit remarked that I presented a pretty darn healthy picture for someone whose records note that her oncologist had been recommending palliative care, we confessed that this returned energy was new.  “Hm,” she said, “Maybe the vinorelbine is already working.”  (More hope!)  It turns out that far from disqualifying me from the trial, she wholly endorses me getting chemo and has encouraged me to continue to get it weekly, if possible, until the 21-day cut-off point.

So, if all goes well, I can begin the trial in May. I will get TDM1 plus two other drugs, pertuzumab and Taxol.  They’re being tested in combination for the first time together, which is why this is called a Phase 1 trial, but the drugs themselves are not Phase 1 drugs – they’ve reached far beyond that – and I am optimistic that they can really help me.  

What if it works?  I think it really could.  Really, I do, because Dr. Detroit does, and she’s been around the cancer block a few times.

But first, all must go well. Meaning I have to get through at least five more weeks without my health deteriorating any further, I have to navigate the not inconsiderable administrative hurdles of getting my records transferred to Karmanos, I have to continue to get vinorelbine (and even lobby to get an extra dose, if possible) and I have to raise massive amounts of money.

But most important of all – and here, ladies and gentlemen, is the catch – there can be no brain metastases. Because if there is, I am not eligible for the trial. Period.  

Or, as I like to say, if there is cancer in the brain, I can’t get on the train.

So, even though the CT scan was clear, everything now depends on an MRI of my brain. I believe I can get through all the other challenges, but this one thing I just can’t control.  Why is there an aura in my right eye? Go away, damn aura. Out damn spot!   Becasue having just found hope again, I can’t stand the idea of losing it so soon.

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The Narrow

Still exhausted and weak but now capable of being vertical for short periods. Thank-you, thank-you, thank-you — your words carried me and comforted me.  As did my mother, my dearest friends, my family, and my incredibly incredible husband.  Everyone managed to hold me together, distract Georgia, feed and water me (despite my protests), prop me up, tuck me in and generally get me through.  Their care and your messages reached me through the fog of fear and pain and reminded me that when I fall I can stay down for a while.  And then I can come back up swinging. I’m not lacing up my boxing gloves just yet, but at least I’m eyeing the ring again.

My husband on the other hand seems to be in full swing.  Today he woke up and left the house early for an unscheduled confab with my oncologist.  By 10:30 I was having a CT scan of my brain, by noon, bloodwork, and a couple hours later, chemo. It’s the one we were holding in reserve, vinorelbine, and my oncologist made special arrangements to get it administered today so that I can still go to Detroit tomorrow.  And I am going to Detroit tomorrow, oh yes I am. If I have to be carried into the car and out again at the other end, I’m going.

My uncooperative and obstinate cancer may not respond to this chemo — given its history of response to standard treatments — but then again, it may. Even if it slows down just a little bit, it will be worth it.

This chemo may also get me disqualified from the Detroit study, but then again, it may not. My family, my oncologist and I all agreed that we have to take that chance; I simply can’t go another 5 weeks without trying some kind of treatment.  Some kind of something.

So, even though I am typing this with one hand and only one eye open while lying down in a vegetal state with an excruciating, pounding headache, I am actually feeling better.  All is not lost.  There is action, so there is hope. 

And best of all? The CT scan showed that my brain is CLEAR!!!  I was warned not to get too excited since an MRI will be required to be sure that there is nothing evil lurking in the neuro-spaghetti, and of course those pesky “auras” and headaches still need to be explained… but don’t get too excited about a clear brain scan??? That’s a tall order, given the shortage of good news around here.  How about just being incredibly relieved and grateful that today at least I don’t have to reckon with cancer in my brain.  Today, and maybe a few more days.  Maybe lots more days.

Yes, I can hope, and I try to.  But yesterday I met with my cancer shrink whose horrific job it was to tell me that I also need to recognize that this cancer is crashing through every obstacle we put in its way, and the reality is that maybe nothing — no treatments or trials or anything we can throw at at it — will stop it from killing me.  My amazing cancer shrink who by the way I truly believe is one of those rare people who is doing what he was put on this earth to do (he really is that good at it.) Unfortunately this is what he was put on the earth to say to me yesterday.  

Not that I hadn’t already recognized it and begun to wrestle with it on my own, and with my family and friends.  But when your shrink tells it to you… ouch.  Holy Moses, it’s real.  It’s moments like those that you realize this isn’t one of those nightmares you get to wake up from. It’s moments like those when the world freezes and you feel like you have just glimpsed the way the whole thing works but it doesn’t matter anyway because all you want to do is love the people you love and live the life you love living… except maybe you won’t get to do that anymore. 

What do you do at a moment like that?  I just cried big fat gigantic splashing tears, and when they slowed down enough that I could look him in the eye I said, “My god. I’d really f**king hate to have your job right now.”

So this is where I am.  This is where my family and I have to live right now: on this razor’s edge, this impossibly narrow place right smack between the terrifying reality that perhaps nothing can stop me from dying from this cancer, and the slim shiny hope of a clear brain scan and a meeting in Detroit.

And so far, the only way I have found to stay sane while living in this narrow place is to say it to myself every day, several times a day, and many times throughout the night: 

but what if it works?

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Crash

I crashed. Bed-ridden. Horizontal. Coughing pain, back pain, headaches, stomach pain, short of breath, no appetite, muscle spasms, weak, weak, weak… Just frightening and terrible.  

Helpless. Never alone, thank god. 

Angry: they let me get this way — they stopped trying to treat me.

Am coming out of it now, I think.  Was even out of bed for a couple of hours (almost) today, putting on a good show for Georgia.

Must rest and recover.  Must get some kind of treatment this week, some kind of help, from my oncologist.  And MUST be well enough to go to Detroit Thursday to meet with study doctor.

Must. Not. Give. Up.

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Let’s Hear it for Motor City

Detroit said YES!

It’s a clinical trial testing the promising TDM1 in combination with two other drugs, and the doctor leading the study is a very well-respected and renowned oncologist.  Plus, I spoke to her on the phone and I really liked her moxie. Detroit is the closest-to-home of all the cities I have applied to – and we have almost-family friends there, which is a great comfort to me as I consider being away from my own little family for long stretches.

BUT…

I am not in yet.  I still have to qualify for the study, which means passing a barrage of physical exams.  My most specific fear is that these migraine auras I’ve been getting and the blurred vision I sometimes experience portend brain metastasis, which would exclude me from the trial.  On the other hand, I’m totally exhausted and all I do is work on a computer all day long, so maybe it’s just eye-strain.  I was saying to a friend earlier today, it’s funny when it gets to the point that the idea of cancer in the brain isn’t scary in and of itself but rather because it might mean I’m not eligible for a clinical trial. (Well, I guess that’s funny surreal, not funny ha ha.)

AND…

There’s another problem. Assuming I qualify, my place on the study will not be open for another five weeks from now. 

Five weeks.

I think we all know I can’t go another five weeks without treatment. I barely have the strength to type this post. And if I fear brain metastasis now, I can be fairly certain of further metastasis to somewhere in five more weeks without any treatment whatsoever.

The good news is that this trial doesn’t require patients to be treatment-free for four weeks prior to start-date, only three.  So I need to access some kind of treatment now, for the next two weeks, and then stop 21 days before the start date of the trial.  This is precisely what the study doctor recommended on the phone this afternoon.  In fact her first questions were all about how I’m feeling and what we can do to improve things before I begin the trial.

So, what indeed can we do?  Radiation? The last-straw chemotherapy? A combo of approved drugs not currently approved in combination?  I have a call scheduled with my oncologist when she’s out of clinic later today to discuss the options. 

Stay tuned…

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Full-time Job

Researching and applying to clinical trials is a full-time job with no benefits, terrible hours, and lousy pay.  The working conditions are truly appalling, and my boss (me) is totally unreasonable, always pushing and driving me, no matter how tired I get. But since I am also the HR department and the union rep, I don’t really have anyone to complain to.  On the upside, the dress code is great (hey, I wore that yesterday!) and the workspace is really comfy (my bed! my kitchen counter!)  Plus, this could turn out to be fulfilling work. We might end up saving lives over here – not a thing writers typically get to do in the course of their careers.

But I’m new on the job and the learning curve remains steep.  Some of the lessons I’m learning are painful: many trials listed as “open” turn out to be closed; and in spite of the fact that patients don’t pay for the trial drugs themselves, the cost of clinical trial participation in the States is staggering (I can’t even be evaluated for trial placement for less than a few thousand dollars U.S.)  It’s hard work, but at least I’m extremely well motivated.

So what does a typical day on the job look like? 

I wake up, get my daughter and husband out of the house, and immediately begin working on finding clinical trials.  First I try to find out if the trials we’ve identified are open – this was recently made easier by a lovely friend-of-a-friend who coached me on decoding clinical trials and gave me a central hotline* for the pharma company testing TDM1. (When I tried calling from Canada they asked that I contact the company’s Canadian headquarters as the service was designed for U.S. residents only, so now I just get my dad to call them from California to see if a particular trial is still open.  He tells them his daughter lives in “the North East.”) This has saved me days of work. 

If a clinical trial is still open, I contact them and try to find out if they have any places left, how long the waiting list is, when they’ll be accepting new candidates, what the application protocol is, etc. etc.  I have usually had at best a piece of toast and maybe some fruit at this point and I tend to become aware of my hunger and the fact that it is past noon, simultaneously.  Or, I get tired and go back to sleep for an hour or two.  My boss permits this as experience has taught her she’ll lose her best worker for the whole day to a migraine if she doesn’t let her eat and sleep a bit.

After my break, I switch my focus back to Toronto, calling my oncologist’s office to follow-up on her progress getting me approved for a non-standard treatment involving standard therapies (don’t ask.)  I’ll forward her any application instructions from U.S. cancer centres, and lately I’ve also been chasing an appointment with the symptom management people.  They are actually called the Outpatient Palliative Care people but I don’t want to say that because everyone knows that Palliative Care means taking care of the dying and that’s the kind of thing that makes me plug my ears, close my eyes, and say “Lalalala” really loudly until it goes away.

What I really want to do at this point of the day is to eat fresh baked bread with lots of butter and take a hot bath.  Instead, I try to follow leads on the most recent trials that Willow dug up for me, trying to track down new central information numbers for them since they are different pharmaceutical companies to the TDM1 trials.  I investigate the possibility of getting access to a closed TDM1 trial (not likely) or access to drugs that are approved but not available in combination as standard therapies (unorthodox, frowned-upon, and tied-up in bureaucratic red tape.) Finally, if there’s any time left in my day I try to research complementary medicines, supplements, therapies, and nutrition – but this kind of research ends up taking a backseat to the all-consuming pursuit of clinical trials. As does remembering to eat well and take my supplements. 

(I am almost 100% sure that somewhere in those last few paragraphs I lost you by using language that sounded like this: sdjfhkkksidfuhserioufjghi.  This is a hazard of my new line of work – you learn that becoming fluent in Cancer Speak is essential to survival, but actually speaking it has the unfortunate side effect of making everyone around you go all glazed and fuzzy.)

Anyway, this is my day, day after day. Onward I trudge.  Some amazing people have come trudging along with me.  There are people who have helped me understand the clinical trial system, people who’ve helped me figure out which drugs or treatments are the best options for me, people who have investigated special access or other programs, and people who have helped me find new trials.

And then there are lots and lots of people who have made me food, made suggestions, made me laugh, made my life easier, encouraged me, advocated for me, kvetched and commiserated with me, and helped me get back on my feet to try another day.

I have all this support – perhaps far more support than someone who wasn’t publicly blogging about her situation would have.  And I have an outrageously supportive immediate circle of family and friends – they want to help, research, make phone calls, and go web-spelunking… They want to and they do.

And yet I still don’t have a trial.

What I do have is trouble breathing after climbing the stairs, lumps that are growing, coughing fits that leave me gagging and shaking, headaches and weird migraine auras and cough fractures and low grade fever and a really pathetically limited amount of energy.  In other words, no time to lose.

I also have a dashing husband with whom I am ridiculously in love, an amazingly beautiful little girl, a family that makes me feel like I was born blessed, and friendships that make me feel like I grew up lucky. In short, a life worth fighting and fighting and fighting for, even if the fight takes the rather humdrum form of hours on the internet and papers strewn all over the bed.

I haven’t worked like this since my dotcom days, and we all know how that era ended.  I may not like this job, but since I’m not quitting and it’s unlikely that I’ll fire me, I may as well get on with it.  But I’m definitely going to speak to management about getting an espresso machine in here.  And maybe a foosball table.

 

*Genentech trial information 6am-3pm (888) 662-6728

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Scary Movie

It was a dark and windy Friday night, when the creeping terrors began to stalk me… inching ever-nearer… closing in closer and closer around me.  There may as well have been a shaky camera shot from the psychotic killer’s point of view (I guess that would be a super-magnified shot of my cellular activity) and foreboding, eerie music. 

It’s my own private horror film, ladies and gentlemen, with screenings nightly. 

And seriously, you can ask my big brother, I cannot watch horror films – never could.  I’m a total chicken.  I watched The Shining in the ‘80s and I still get nightmares about those creepy twins in the hallway.  Depending on the carpet and wallpaper, I won’t walk unescorted down certain hotel corridors to this very day. So you can imagine how well I do when the horror film plot centres around me as the constantly stalked target of unspeakable evil.

And Friday night, there I was once again, playing the victim, getting all freaked out and terrified and tearful. I slid deeper under the duvet, but it was no use trying to hide! The floorboards creaked in the hallway and the bedroom door slooowly opened… And in walked my husband.

“Hey. What’s going on here?” he asked, seeing me all balled up under the duvet, hugging my knees.

“Um, just having a little freak out.” I squeaked.

“Ohlalamonamourvraiment” He said, just like that, all in one mashed-up French word that basically means “Oh no, not again.” He plopped down on the bed and gathered me up in his arms.

“Yup,” I said, “I’m freaking out that I’m going to die and wondering how you and Georgia are going to handle it…”  Which was only partly true.  What I was specifically freaking out about was whether Georgia should be at my funeral or whether it would screw her up for life.

I know. How morbid! How horribly melodramatic!  Even I can’t stand it – I want to slap myself to snap me out of it. 

Luckily I’m not in charge of consoling me and my husband isn’t a slapper.  Usually he lets me cry it out, probably feeling helpless as hell, until he can safely say something to make me smile or laugh and we can wade hand in hand out of the muck of fear and sadness onto terra firma again. Or terra temporarily less squelchy.

Not this time.  This time he wasn’t having any of this terrorized woman hiding under the duvet crap.  He was even a little bit stern with me (which honestly is a tactic I might employ with myself if I were in fact in charge of consoling me.) 

He told me that I am not gone yet and that I need to stop imagining myself gone.  He asked me – actually pleaded with me – to stay here-and-now, to try hard to stop thinking about death.  And if I can’t, then at least to try to stop letting it into the bedroom at night right before I’m supposed to fall asleep, because even if it can be liberating to confront fears of death, it sure isn’t conducive to sleep.

This is obviously extremely sensible, extremely practical, especially coming from a Frenchman.  And he wasn’t taking no for an answer, either.  So I agreed.  Actually I was surprisingly relieved to be bossed around like that; to be instructed to stop thinking about the big D, just when I had laid claim to being allowed to think and talk about it whenever I want to.  Because I realized that it’s a fine line, and if I’m not careful, it’s not me that lays claim to the fear, but the fear that will claim me. 

Not that anybody should get any ideas about bossing me around on a regular basis.

Now, what I really need to do is move the stack of cancer books away from my bedside and get my hands on a few good novels. Preferably not anything that involves creepy little girls with big foreheads and matching dresses.

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Chasing Trials South of the Border

Yesterday marked five weeks since I last received treatment for my cancer, thanks to low white blood cell counts preventing treatment in the weeks before my last CT scan.  Five whole weeks since the last time I was given anything at all with which to combat this disease.  They may say my cancer is unresponsive to treatment but something must have been making a difference, because in the past few weeks the cancer has noticeably advanced. I can literally feel it advancing. There are lumps in places there never were before, and the old, familiar (once disappeared!) lump in my neck has grown to the size of a ping pong ball.  Plus, my breathing has become a bit more laboured, and my coughing fits are sometimes so violent and unrelenting that I end up in tears.

To have the little flickering light of opportunity that the Montreal drug trial represented snuffed out at a time like this was utterly devastating.  Universe, you are a turd-head.  I ask it again: Why do Nazi war criminals and child molesters get to die of old age?  Who’s in charge here? And don’t give me that “mysterious ways” crap.  Come over here and watch me try to catch my breath long enough to read my kid a bedtime story and then talk to me about mysterious ways. It’s like the universe is being run by a schoolyard bully who is high on acid and has grown weary of torturing cats.

Alas, crying “Not fair! Not fair!” isn’t going to get me anywhere. My husband and I wiped our tired eyes and dusted ourselves off.  Time to get back on our feet, yet again.  Time to act.

So yesterday we went in to see my oncologist, fully prepared to coerce, plead, blackmail or otherwise drag her into a more active role in our desperate pursuit of a drug trial.  Instead, we were pleasantly surprised to find that she was instructing us on the need to take immediate action and to move ahead with applications for all potential TDM1 clinical trials simultaneously. Her sense of urgency, it turns out, is equal to our own. Perhaps greater — I was almost alarmed at her no-time-to-lose approach.   

In addition to the Great Trial Chase, we covered every physical concern I have, from the ping pong ball to the coughing fits. She made suggestions, proposed options, and was sympathetic but serious.   

In short, I felt in every important way that I’m still her patient, and that she is committed to giving me the best care she can, even though this clinical trial quagmire is relatively uncharted territory for her too.  She is “very busy” it’s true, but she is not the problem in this equation.  If I point my finger (and I do) it’s not at her. I’m pointing it at the system’s treacherous gap, the one into which I have fallen and am struggling to clamber out of.   

Anyway, while feeling good about my oncologist is important, what really matters is that we are once again moving toward doing something to push back against this cancer: We left with the enrollment process underway for three different TDM1 trials at six different sites in the U.S — several of which we have unfortunately already heard are closed.  It’s a nail-biting time, trying to get into these trials. And while we have always said that what matters is that I get the right drugs, and not where I get them, the logistics and finances of pursuing treatment in the States are a bit daunting.  But we’ll figure something out. First, I need to be accepted into a trial somewhere, then we’ll figure out how to get me there.  We have to.  What choice do we have?

I really believe TDM1 is promising, and right now all my energy is being directed at getting into one of these trials. I’ve literally been at it since I woke up this morning.  I forgot to eat.  I forgot to take my vitamins. I ran a bath and let it get cold.  All that matters is getting into one of these trials.  Okay, eating matters too.

But will it work?  Something has to work.  Last week, caught between the nightmarish fear of my own death and clinging to the faint glimmer of hope represented by the Montreal clinical trial, I tearfully asked my friend Eden, “But what if we go through all of this and the clinical trial doesn’t work?”

And she said, “I know. But what if it does?”

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Stop The Ride, I Want to Get Off

My oncologist’s secretary just called me to tell me that the Montreal study is closed. 

I’m flabbergasted and enraged. Enragergasted. Flabberaged.

First of all, it took them a week to find that out??  When did this trial close?  Please don’t tell me it closed within the last few weeks.  Please don’t tell me that someone with medical experience could have tracked it down in time and started the application process for me in the past few weeks while I was flailing around desperately trying to navigate clinical trial research on my own.

On the phone with my oncologist’s secretary I skipped over all that and jumped right to the point: “What do we do now?”  My question was answered not with a list of options or an outline of an action plan, but with another question. The ball was thrown right back at me: “Have you tried looking at any trials in the States?”

Yes of course we have, and what’s more, they already know this because I provided them with a document outlining the shortlisted clinical trials that we found. I can accept that they are so overrun that they don’t know my case by heart. What scares me is that they haven’t even checked my file before calling me. 

Calmly, I answered the question.  I didn’t cry or shout the entire time I was having this ridiculous, unbelievable, horrific conversation.  I only lost control once, when I raised my voice a little, asking that my doctor and her secretary treat my situation with the urgency it requires. “It’s my life we’re talking about here.  Please, I just need you and Dr. XX to take it a little more seriously, to work a little harder for me.”  

She said “We’re trying.  We’re very busy…”

I almost laughed.  Really. It would be funny if it weren’t so scary.  Because you can tell me that you are very busy if your job is, let’s say, filing lawsuits, or repairing bicycles.  You can get backlogged or let things pile up without too much risk to human life.  But telling me that you’re too busy to help me survive is not acceptable. Not in the breast clinic of one of the biggest cancer centres in the world.

It makes no sense.  It is a nightmare. It’s a horrible joke. It’s my life.

So I asked for three things: 

1) Research whether there are ANY open TDM1 trials in Canada for which I might be eligible.

2) If there are none, look at our shortlist of clinical trials at U.S. sites and tell us which one to pursue, since we are not equipped to make an informed decision on our own.

3) Tell me if Health Canada’s Special Access Program would apply in this case — in other words, can I get TDM1 on compassionate grounds?

I should have asked for one more thing:

4) Stop the ride, I want to get off.

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Filed under Living with Breast Cancer