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.
My husband and I went to a movie today! Yes, as in a movie in a theatre! With actual popcorn! Up and out and enjoying ourselves like a normal couple on a Sunday afternoon – how great is that? And then out of the dark theatre and into the sunny, breezy spring air, on a hunt to satisfy my latest craving: veal scallopini! (It’s almost always Italian these days, but even I was surprised by the veal.)
Needless to say I had a great day. I am feeling much better, and for that I thank the vino(relbine.) Although a glass of Barolo would have been nice with the veal…
I’m as happy as I am relieved, since I had thought that by last night I’d have seen a bit of an improvement, but didn’t, and began to worry. In fact, I was feeling so unwell last night that I made the mistake of introducing a new painkiller into the mix and ended up sweating and hallucinating on my bed for three hours. Nothing too evil, just some white ostrich feathers waving at me from the bedroom ceiling, but still, who needs that? And unfruling white ostrich feathers? That’s not even my hallucination — surely it belongs to my daughter’s very fabulous choreographer godfather. (Obviously from now on I’m sticking with Big Daddys. We understand each other – I follow the ‘script, Daddy takes the pain away, and no ostrich feathers on the ceiling.)
Once I emerged from my bad painkiller trip, the worry was still there: maybe I wouldn’t get the bounce-back this time like I did from chemo last week. I wasn’t really feeling the energy come back like it did two days after chemo last time and I began to fear it wouldn’t happen again, that perhaps it had just been the excitement of Detroit and all the hope we felt that had somehow infused me with a perception of improved health…
It was a depressing thought. But sometimes, when it’s been nothing but painkillers and lousy sleeps and gasping for breath it gets really hard to believe that it’s not always going to be that way. That it’s not always going to suck that much. I started to wonder how long I could sustain it, because the only time I wasn’t feeling miserable was when I was asleep, and that only ever lasted three hours at a time. Those nights can be long, and the thought kept returning, If this is how it’s going to be, how long can I possibly last?
So now that I feel the return of my energy, I’m embracing it – but also trying not to burn out. Trying, if I can, to store it up so I have some chutzpah in reserve for the next nose-dive. It feels so good to feel almost normal; it makes me think I can do this. Whatever comes next, as long as I’m not doomed to be a bed-ridden vegetable for all my days, I can do this. I can come back from this, find a way to beat back the cancer, get it out of my lungs, breathe again, and get my life back.
Seriously, that’s what a matinee and some Italian food can do for me. Imagine what I’d be like if I got into the champagne?
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.
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.
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.