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.
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.
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?