Brain MRI Results

THERE IS NOTHING IN MY BRAIN!!!!!!!!!!!!!!  EXCEPT MY BRAIN!!!!!!!!!!!!!!

The MRI came back clear! I can hardly believe it (especially as I have a gigantic headache aura as I type this) but it is the best news ever!!

I’m giddy, I’m elated, I’m relieved… I’m stunned and thrilled.  Hope – that fickle flame – has been reignited and doused with gasoline!  The champagne is chilling in the fridge; when my husband gets home (and once we stop hugging and crying) we’ll drink to healthy grey matter!  Could there be a better, happier toast?

Detroit here we come! Nothing in the brain means I’m getting on that train!

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A Not So Good Day

The good news is that my blood counts were fine and I was able to get Vinorelbine yesterday!

The bad news is that I came home and barfed!

My nurses think it was more likely due to adjusting to Big Daddy + empty stomach + coughing/gagging than the chemo.  Nonetheless, totally gross and uncalled-for.  I slept for about an hour before heading back to the hospital for the brain MRI.  Not easy in my state (but still, what a wonder that lying still in a space capsule while being assaulted by the sound of various pavement-smashing construction tools for approximately 40 minutes delivers a picture of my brain!)  Then home again and weak and exhausted.  And so depressed. That’s the thing, it all just wears you out.

Altogether not a good day.  A completely crap day, in fact.  But I had a better sleep last night and am staying on top of the pain today.  I’m still weak – but I have high hopes for the vinorelbine to begin working its magic again like it did last week.  Also, helping out on the emotional front, my dad is back in town and my cousin from the U.K. showed up for a quick visit, which has boosted my spirits as it always does when we see each other (which is far too rarely.) Although I have to admit, we’d both prefer the traditional pub visit to this bedside visit nonsense. 

Meanwhile my husband and mother (aka: The Executive Committee) have decided that my only job is to eat as much as I possibly can – and super-clean anti-cancer diet be damned.  All that rice and miso soup and seaweed might be good for me, but the pounds were dropping and bones are beginning to stick out where they ought not.  It was a supermodel diet and I wasn’t a particularly fleshy woman to begin with, so the effect was not that desirable.  Besides, seaweed?  Please, it’s enough to make anyone nauseated.  So, the new rule is if I want pizza, I get pizza.  (I don’t want pizza, but I do want pasta… mmm, yes, the fusilli from the Italian place down the street!) My cravings are varied and my appetite sporadic, but I’m eating.

And now, we wait for the results of the MRI.  How do you stay hopeful and optimistic while at the same time steel yourself for the worst?  Can it be done?  The CT scan was clear.  That must count for something.

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.

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.