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.
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.
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?”
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.