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.
As I mentioned in my last post, it appears that once you drop out of the realm of standard cancer treatments, the system isn’t designed to support you quite in the same way. I don’t think anyone knows exactly what to do with me. And it’s extremely unnerving.
This predicament is many-layered and messy, and it has occupied my time and energy for the last several days, but I’m not going to go into a lot of detail for two reasons:
1) I tried to write this post detailing exactly what happened (or didn’t) and it ended up being about 5 million words long, and
2) I don’t understand exactly what happened (or didn’t) and I don’t want to write anything unfair or untrue.
Suffice to say that as the fog of our initial shock lifted, we surveyed my situation and found that it was a total crash site. We needed a plan — knowing what the next steps would be and who was leading us through them was the key to getting my fear, despair and uncertainty under control. But we didn’t have a plan. We had a piece of paper with a web address (clinicaltrials.gov) and some search parameters written on it, but no real understanding of what comes next.
Admittedly, we were in shock when we heard the news that my cancer does not respond to standard treatments so it’s possible we were given information that just didn’t register, but we left the clinic without really knowing what to do and the result has been confusion, insecurity and a (possibly misplaced) sense of abandonment. And of course, a little rage.
However, we’ve since made some progress identifying clinical trials and other options, mostly by communicating with my oncologist and enlisting the help of friends, my hospital’s excellent social worker and my very caring and capable family doctor. I’m blessed with incredibly supportive people in my life who are good at networking and handy with the Internet. They’ve been researching, calling doctors and other people who might be able to help, and generally just sleuthing around to try to find promising programs and clinical trials that I might be eligible for. I can’t emphasize enough the importance of having people to advocate on your behalf when your head is spinning and you’re lurching unsteadily between terror, rage and optimism like an emotional bride of Frankenstein on newly cobbled-together legs.
Meanwhile I’ve made some changes where I can – every little thing counts and I decided that if there was going to be a pause in my treatment I may as well use it to detox from all the chemo and try to rebuild my immune system. Actually, my mother decided that and I agreed since it’s widely acknowledged that there’s no point in disagreeing with my mother when she has decided something. So I now take about three handfuls of vitamins and supplements a day and have finally and begrudgingly cut back on meat (fois gras is technically poultry,) alcohol (champagne is technically bottled happiness,) and sugar (I cannot be expected to give up chocolate entirely.)
Plus my friend Todd is a nutrition-fascist with a juicer and a lot of experience with cancer diets, so I spend my days knocking back his crazy cayenne- and tumeric-spiced leafy green/dark berry cancer-killing concoctions. They’re actually not as bad as they sound, and no, I have not spiked them with vodka. Yet.
In short, things are moving more or less in the direction of action, though I wouldn’t say I have an actual plan since we haven’t yet identified the clinical trial for which I’m going to apply.
I do have my eye on one promising experimental drug in particular, but there are no trials for it in Toronto, and while we’ve always said that we would find a way to go wherever the right treatment is, right at this minute I have no idea how we would manage to do that, logistically or financially. But I’m trying to just think about things one step at a time, and today’s step is to see what there might be for me in Toronto. This afternoon we’re meeting with the head of clinical trials at my affiliate hospital to see if we can match one of their current studies to my case. I’m somewhat optimistic – after all it is one of the top five cancer centres in the world – but my approach is to find the clinical trial that has the best chance of pushing this cancer back from whence it came, not to try to find the closest match of the most conveniently located trials available.
So once we have an idea of the most promising studies, wherever they may be, we need an informed review of them all and a fairly quick decision. Ideally I want to know what treatment I’m starting (and when and where) by the end of this week. That might sound like a tight turn-around but I’ve got a mean mother of a metastasis taking up a little more real estate in my body every single day and I need to do something about it before the whole neighbourhood goes ghetto. My rib continues to hurt, my cough is much worse, and my breathing is hampered by the pressure of the lymph nodes on my bronchial passageway. This cancer has become symptomatic – I can feel its progress – and quite apart from what that’s doing to me psychologically, it’s wearing me out physically.
I know I need rest and peace, but I won’t be getting either until I have a plan.
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.
Please be off.
Please do your best
to vacate my chest.
You steal my air.
You cause me to swear.
I would like to breathe
But you make me seethe.
Inside my head
I’m full of dread
I’ve had it with you
I say Shoo! Shoo!
Just to be clear
You’re not wanted here:
Please, eff off.
When we got my fantastic CT scan results, I think I mentioned that we were still waiting for my doctor to get the results of my chest scan. Well, yesterday she called to confirm that all of the affected (cancerous) lymph nodes between my lungs have indeed either stabilized or shrunk!
<Insert sound of cheering here>
Yes, yes! Wonderful, thrilling, spectacular news, and I’m obviously happy as can be. But before we go high-fiving and popping the champers, there is a bit of a “However,” and it goes like this:
However, there are other little spots on my lungs that appear to have increased in size and number.
<Insert deflated sigh here>
My oncologist explained that it would be unusual for some metastasized cancer spots to shrink or stabilize while some grow, so just what these spots are is a bit of a mystery. Also, the dry, squeaky pet toy cough has returned, and she wants to find out if there is some kind of infection that should be treated before we completely steamroll my immune system with chemo.
So, off I went this morning to see a respiratory specialist at Toronto General, my friend Angelique at my side, acting as my emotional buttress and auxiliary brain. Child of two highly accomplished doctors, she knows her way around a hospital, and we sometimes call her Spawn of Doctors, or more affectionately, Spawny.
The respiratory doctor – let’s call him Dr. Lungs – was personable and professional and Angelique and I both give him full marks for bedside manner and professionalism. He’s the kind of doctor that makes you feel safe – he knows what he’s doing and he treats you like a human being. He should probably be on a speaking tour, instructing other doctors on how to interact with patients, but unfortunately I need him here right now. He asked questions, and I gave him my cancer history, rattling off dates, clinical terms and names of drugs like a keener med student. (This is what you learn to do after living with cancer for a while; you learn your medical terms. It makes things go faster and more smoothly.)
In order to try to find out what those mystery spots are, Dr. Lungs wants to do a procedure which sounds rather nasty and involves sticking a probe down my throat and checking out the little flecks and then washing my lungs with salt water. The probe is called a “bronchoscopy” and the water part is called “lavage” which is French for “washing” and English for “simulated-drowning-at-sea.” Not the most festive event on my holiday calendar, to be sure.
On the upside, Dr. Lungs showed us the supercool CT scan imagery of my chest cavity and not only did it look like the solar system in a bucket, but when he was pointing out the flecks that have grown and multiplied we actually couldn’t tell them from the other “normal” flecks – and this was effectively a comfort to me.
He moved his cursor around a galaxy in the right lung and said: “Here you see the abnormal spots from the August scan…”
“Mmm-hmmm…” We murmured appreciatively, thinking “Um, no, actually we don’t see them. They look just like all those other things you said are normal spots.”
Then he moved his cursor to the other side of the screen, where my most recent CT scan was, and said: “And here you can see that the spots have grown a bit, and that there are more of them.”
“Ahhh. Mmmm.” We said, thinking, “Dude, that looks like the planetarium. Seriously, we can’t tell good spots from bad spots.”
So, thanks to our inability to interpret CT scans, it wasn’t as scary as it was fascinating. It practically made us want to listen to Pink Floyd and spark up a joint, which probably (being a respiratory doctor) he wouldn’t have permitted. The important thing is that the technology was amazing, and his explanations were reassuring. It made me feel like we can see what sneaky little cancer is up to.
Anyway, the “procedure” is scheduled for Monday morning. I am hoping it reveals an infection, because if it doesn’t, we still have a mystery on our hands. As for the cough, Dr. Lungs thinks it could be caused by this constantly dripping faucet that I used to call my nose. There is some kind of treatment for that but my auxiliary brain will have to remind me what it was. Between the glorious “99.9 percent certainty” that the flecks aren’t lung cancer, the dazzling digital apparition of the solar system within my chest cavity, and the freaky details about my “procedure” – I was pretty much at capacity. My disc is full. Thank god for emotional buttresses & auxiliary brains.
Armour up, everybody, looks like we’re hunting dragons again.