Apr
09
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.
Mar
30
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?
If Forrest Gump says life is like a box of chocolates, I say chemo is like a row of cubicles in a public washroom: You never know what nasty surprises you might find when those doors swing open – but when you gotta go, you gotta go. Alas, my most recent round of treatment was more like opening a cubicle door in a bus terminal ladies’ room than one in a high-end restaurant. In a word: vile.
The truth is, I was caught off-guard by the nastiness of this chemo. My previous two rounds with it had actually gone fairly well (relative to just how unwell chemo can go) and when asked I would say, “This isn’t the worst chemo I’ve met.”
But, to mercilessly belabour this toilet analogy, even if you’ve previously visited a particular public washroom before, there are no guarantees you’ll find it in the same condition you did the last time you were there. In other words, just because I’d had a fairly good run at this chemo before, it didn’t mean I could expect it to go well again. It’s a, well… a crapshoot.
So this time around the nausea has been aggressive, as were the flu-like symptoms for the first few days. But the worst and weirdest of all is a super-intense back pain behind my right shoulder. It feels like I have a little knife lodged there, and every time I cough it twists in a little deeper. It started Friday morning with a sharp pinch on my right side every time I hack-hacked, or bark-barked. By late afternoon I was clutching my side and doubling over a bit with every cough. By bedtime, the pain had intensified, migrated around back and set up permanent residence, and I was sleeping with a heating pad under my right side.
It seems that my evil cough, not content to torment me with mere anxiety and irritation, has now added physical pain to its roster of tricks. So I cough on, and while the pain isn’t unbearable, it does make me stop, clutch, bend, and brace myself with every hack-hack or bark-bark. But the real problem is the psychology: every time I cough and the knife twists deeper, I’m acutely aware of my illness. Instead of being able to amble through my days without having to think about cancer all the time, symptoms like this one serve as a little cancer reminder every few minutes.
I don’t like this. Denial is one of my oldest and trustiest friends. Moving through my daily life without having every waking thought coloured by cancer is a state of being I’ve come to depend on for my sanity. When side effects and symptoms are front and centre (or around back to the right, behind the shoulder blade) the psychological effect of constantly being reminded that I have cancer is compounded by physical pain and discomfort… and frankly it stinks. Really, it does. Please don’t tell me to keep my chin up, either. You can grin and bear it, I’m going to slink around muttering obscenities and popping pills.
On the other hand, I may just be imagining the link between my cough and my cancer. I say this because when I discussed my worsening cough with my oncologist last Thursday before treatment, I found out that the prevailing theory continues to be that the cough hasn’t really corresponded to “progression of disease.” In other words, it has sometimes been present when no lung specks were visible on CT scans, and at other times it hasn’t bothered me much even though scans showed progression of spots or specks – so it’s hard to reason that the cough is definitely tied to the cancer. There is still a strong belief that it could be caused by lung irritation due to something as banal as post-nasal drip (i.e.: my constantly runny nose) which itself was caused by long-term chemo side effects. Therefore, so goes the rather optimistic prevailing theory, I shouldn’t worry too much about the cough, at least not until or unless the results of my upcoming CT scan on February 23rd give me reason to.
Okay… Still hurts though, so what’s a girl to do? Maybe if I can block out the psychological stuff, the physical experience might be more bearable. Like facing a disgusting public toilet in a desperate situation, you just hold your breath and get through it, with your eye on the prize and your nose plugged.
Yikes. Would so much rather be dealing with the chocolates.
*Ladies: A quick word, please, while I have your attention, on the matter of hovering or sitting on pubic toilet seats. Before I had a little girl I didn’t have to think about it – hovering was my default, whether five-star establishment or basement dive. But now that I have to actually place Georgia’s pristine backside on those seats, let’s discuss. One hovers to avoid sitting in a nasty pee-splashed bacteria-ridden mess, right? But consider: how did it get pee-splashed in the first place? I’d wager it got that way from careless hovering. If you find it splashed-upon, go ahead and hover, but if you find it clean and you hover, you MUST wipe. Careless hovering perpetuates the need for hovering. If (as the saying goes) you sprinkle when you tinkle, I beg you to give it a wipe. Please, for Georgia’s sake.
Jan
16
As long and exhausting as my day at the hospital was Thursday, there were some pretty nice perks to make it more manageable. The Day Chemo ward, it turned out, was so overloaded trying to catch up on missed days over the holidays that I was told I would be moved to a bed in a private room on another floor. Did someone say Private Room? Hello, yes please! Not that I don’t love the social atmosphere and familiar faces in the Day Chemo clinic, but I was tired and had an long day ahead of me so I welcomed the prospect of solitude and sleep – my mom was all the company I needed. Plus, let’s be honest, who doesn’t like a little extra pampering?
My smart nurse, Roz, probably knew all this when she sent me down to what, after about 15 minutes, I came to refer to as Hotel Chemo. (Or, because it rhymed with my nurse’s name, Chez José.) My five-star experience included: a comfy bed in a quiet place, a door that closed, lights that dimmed, a hot meal (well, okay, I declined the hospital food and my mom went on a food run), fantastic care from a great nurse (this is actually the norm no matter which floor I’m on), and …wait for it… a visit from the therapist pictured below:
Differently to other therapists I’ve encountered, this one is very cuddly. Zoe snuggled right up with me and just hung out on her little towel on my bed, keeping me company for a while before making the rounds of the in-patient oncology ward. Can you imagine? She’s just this little furry ball of sweetness out to make people smile.
I had never heard of this before – this “pet therapy” – but it’s really a nice thing. Here is the website if you want to learn more about these caring canines: http://www.tpoc.ca It’s amazing the comfort a little puppy love can provide.
Jan
15
It was a long, long day at the hospital yesterday and I am totally knackered. I came home and rested a bit and then my husband and Georgia stormed the premises, but thank god Georgia’s godmother came over too, to help wrangle the Whirlwind. The Whirlwind was actually in quite the difficult mood – she was certainly not going to be nominated for any behavioural awards last night – and that’s enough to wear you out on any day, let alone one that involved seven hours at the hospital. In fact, we’re pretty sure last night put the godmother’s child-bearing plans back by at least six months…
Nonetheless we managed; we made it through dinner and bedtime without too much additional drama. Very shortly after Georgia was tucked in for the night, I too said good night and headed up to bed. As I was climbing the stairs I had one of those thoughts – the kind that have the power to bring you right down and leave you smack in the middle of darkness and devastation if you let them: “When did this become my life? How did I get here — to this life full of cancer and exhaustion and sickness and stress — from that charmed, beautiful life full of privilege and blessings…?”
This is known as a Pity Party. Or as the start of one. It can spiral right out of control, leading to tears and trauma. Orrrr, you can snuff it out like an offensively over-scented votive candle.
It’s not that it’s not all true: I did lead an extraordinarily happy and blessed life — not one totally devoid of challenges and pain, but pretty darn good all around, pretty much right up until I got hit with the cancer stick. Yet despite appearances, I kind of think my life continues to be incredibly good. I may not be the luckiest person alive, but I have a really good life. And it turns out that some rather previously-unimaginable blessings have come from this experience of having cancer. (For more on this, you can refer to earlier posts questioning the idea of cancer as a “gift.” I’ll save you the suspense: I don’t believe for a second that cancer in itself is a gift, but it does bring with it some undeniable silver linings.)
Anyway, I had just reached the top of the stairs when another voice interrupted the Pity Party Planner’s escalating lament, “When did my beautiful life turn into this constant, unending battle…blah blah blah…” with a firm “Well, it may not look as rose-coloured as once it did, but it is still your life. And it’s actually not a bad one. Have you seen Haiti lately? How’d you like to pull your child out of the rubble? Get a grip. You’ve got cancer and you have to live with it. Live being the operative word.”
It can be such a ball-buster, that other voice of mine. But it certainly did the trick. Snapped me right out of my downward-spiraling, woe-is-me mood. By the time I was brushing my teeth, I was thinking back at our warm, familial evening and the love and laughter that flowed so easily in and around the eddies and crests of Georgia’s hooliganism; at our delicious dinner of take-out Japanese food in our great house, and the conversations and connections on a million levels between we three old friends; even at Georgia’s absolute certainty of her rightful place at the centre of the universe. Just before switching off the bathroom light I caught a glimpse of myself in the mirror and I had a half-smile on my face — I knew it was true: my life is still blessed. A bit chaotic, battle-scarred, and full of dramatic ups and downs, but definitely still blessed, at least by my measure.
Pity Party postponed. That other party, the celebration? Definitely still on.
