My blood counts were once again too low for treatment today. This is a little disconcerting, a little frustrating – but I understand that it’s not the end of the world. This chemo is serious stuff and my body needs to recuperate a bit.
What was more than a little disconcerting was all the conjecture today about my back pain. When I told the nurses about it they said that maybe I’d cracked a rib, but reassured me that it didn’t mean anything, that this can happen to people who cough a lot. However, I needed to be seen by a doctor and since my oncologist wasn’t there, I met with a resident. I explained the whole pain-when-I-cough scenario and he, like the nurses, said it was likely a fractured rib.
Here’s where it gets troublesome: I asked if fracturing a rib was fairly normal with a serious cough or whether it means that the cancer has likely spread to my bones. He didn’t even pause before saying “Yes, it’s likely that it has spread and I would expect your bone density is low.”
Okay, here’s a tip for all you up-and-coming oncologists out there: your words are powerful – wield them with caution. You are not a mechanic, the patient is not the driver of a malfunctioning vehicle. You’re a doctor and this is my body, my life we’re talking about. If you are going to tell someone with metastasized disease that it may have further spread – in other words that the treatment isn’t working and things are getting worse – consider that this information might have emotional consequences. Consider that it might freak the patient out a bit. Don’t just throw it out there like you’re talking about a carburetor or a transmission that blew, because it’s not a car, it’s a human being and there are emotions attached to that carburetor; there are questions of mortality attached to that transmission.
Seriously. I was shocked. I immediately began processing the implications of yet another treatment not being able to stop this cancer. Tears started to pool in my eyes and I had to focus on breathing so that I wouldn’t suffocate from the g-force of fear pressing down on me. The doctor began looking extremely confused and stressed out about my tears. At the same time, my mother seemed to rise from her chair and materialize protectively at my side in far less time than it is humanly possible to cross a room. Also, she had somehow procured a box of Kleenex enroute.
But then the voice of reason kicked in. It said: Check out the look of horror on his face. Does this guy even know what he just said? So I dug deeper.
I asked what else could be causing the pain, whether it was possible that I haven’t cracked a rib at all, that I just pulled something? He said it was just as likely.
Just. As. Likely.
A bruised rib or pulled muscle is not an indication of disease progression. I had to resist simultaneous urges to hug him and smack him in the head. I even managed not to shout What’s wrong with you? Why didn’t you say so in the first place?
The pools in my eyes began to evaporate and the weight of the air was suddenly more bearable. In other words, fear left the room. It didn’t leave the building – in fact it has maintained a respectful following distance all day – but at least it’s not sitting on my lap anymore.
Dr. Still a Little Inexperienced (Let’s call him Dr. SiLI for short) and I decided that an x-ray today would reveal either a fracture or potentially indicate other possible causes of the pain. He would call me with the results. Of course the CT scan on Tuesday will tell us much more, but I pointed out that waiting approximately ten days from now for those results would not be psychologically ideal for me.
Then Dr. SiLI examined me. (Not a bad idea, since after all he’s a doctor and I’m a patient with a complaint of physical pain.) He listened and tapped and prodded and poked around looking for the supposedly cracked rib, asking, “Is it here? Here?” while I replied, “Um, I don’t know… maybe up a little…” and ultimately resorted to coughing in order to locate the pain. Then, when he pressed it, I didn’t yelp or jolt my body away — in fact it felt kind of good, like a massage. This I take to be a good sign, because the only time I ever officially fractured a bone you couldn’t even look at it too closely without causing me pain.
So Dr. SiLI gave me a ‘script for the pain & sent me for an x-ray, and then my mom and I left the hospital and did what any normal people would do after such a roller-coaster of a morning: we went to the movies.
And here I am a few hours later, eating vanilla ice-cream right from the tub as I transcribe the drama of the day from the safe distance of a few hours spent with George Clooney. And you know what? I’m actually thinking how far I have come in this role of Person With Cancer. It wasn’t so long ago that I would have staggered out of the doctor’s office in a state of shock and trauma, without the experience or presence of mind to stop the panic, dig deeper, and question further. The doctor’s first comment would have immediately convinced me that the disease has spread to my bones – and who knows, maybe it has. But it’s just as likely that it hasn’t. Just as likely.
Those three words don’t get me any closer to knowing the facts, but they are enough for now. And I know fear is still camped outside my front door, but I’m not sharing my ice-cream.
I’m happy to report that I survived the bronchoscopy & the lavage – and I don’t think I’ll actually need years of therapy to move on from the experience! The psyche-out proved to be worse than the reality. And while the experience was not pleasant, neither was it the traumatizing torture I had anticipated.
This is in no small part attributable to Dr. Lungs’ incredible capacity to communicate with patients in a manner that is calming, informative, human and respectful all at once. The guy has a gift, I’m telling you. Imagine explaining to a patient that you are going to make them gargle something that tastes like crazy glue, fasten a muzzle-like contraption around their mouth, stick tubes down their throat, poke around in the lungs a bit and then wash them out with “about half a pop can’s worth” of saline – and instead of having the woman run screaming from the room, she becomes more confident, calmer, less anxious. Seriously. Even throughout my cross-examination he remained personable, and cool as a cucumber:
“Am I going to feel like I’m drowning?”
“But aren’t my lungs sort of designed to reject water?”
“Yes; you might cough a little, but you probably won’t feel it.”
“Am I going to gag on the tube thingy?”
“No, the freezing and the sedative will take care of that.”
“Can I please be heavily sedated?”
“We’ll make sure you are comfortable.”
“Can you make sure I’m a vegetable?”
“Don’t worry, we we’ll make sure you don’t feel any discomfort or anxiety during the procedure.”
“Now, that’s what I’m talkin’ about.”
Between him, the lovely nurses and the fabulous drug cocktail with which I was sedated (“We’re going to give you your martini now,” said the nice nurse), it was completely bearable. Because I was completely stoned.
I already had a cold and a cough going into it, and was told that might make the recovery slightly worse, but apart from post-procedure coughing I feel fine. I mean, I was doped up to the nines and had to sign a waiver saying I wouldn’t make any legal or financial decisions today (wait… is signing a waiver a legal decision?) so of course I slept deeply and magnificently all afternoon, and now I feel fine. Cough-cough-coughy and tired but fine.
And now that it’s all just a slightly blurry memory, we have nothing to do but wait to see what the good doctor was able to discover with his lung-spelunking activities. He assured me that it isn’t emphysema, and I’m still hanging on to his previous “99.9%” assurance that it isn’t lung cancer, so I can at least stop obsessing about those two horrors and focus on hoping for good news.
It’s Sunday night and I’m feeling a little anxious about tomorrow’s bronchoscopy/lavage procedure. I’m contemplating what it will entail: they’ll put the equivalent of a drain-snake down my throat and into my lungs and then (because that’s not horrifying enough a prospect) they’ll wash my lungs out with salt water. And they plan to do all this while I’m awake.
For real. Doesn’t it sound alien abduction-esque? Or like something that might happen at Guantanamo?
At least I’ll be sedated, which is the next best thing to being out cold. I’m hoping to be heavily sedated. Like sky-high and super mellow, simultaneously. Goofy smile, drool, whatever. Just as long as I don’t feel like I’m choking on tubes and drowning at sea.
Maybe my imagination is worse than the reality will be. Perhaps it won’t be so traumatizing, this tubes-down-the-throat procedure and this so-called “lavage.” (They can’t fool me; just becasue they say it in French it doesn’t make it ok.) Anyway, unpleasant as it may be, I know it must be done – we need to know what’s going on in my lungs, and sooner rather than later. I just hope that whatever it is that we find, it’s more pleasant to treat than it is to diagnose.
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.
On the way to the hospital this morning, as we navigated the morning rush hour / rainy day traffic, my husband and I were saying that we would just for once like to leave one of these meetings with some really good news. Just a little luck, that’s all we wanted. Sometimes it feels like we’ve been so beaten down with bad news and raw deals that just a tiny bit of good luck would send us into paroxysms of glee and gratitude. We’d be so giddy that people would cross the street when they saw us coming.
So, because the universe has a sick sense of humour (and has obviously bugged our car) when we arrived at the normally chaotic, totally un-parkable hospital, we found the world’s most perfect parking spot waiting for us right in front of the entrance to the breast clinic elevators. Imagine – in the pouring rain, armed with a broken umbrella (I pulled it out of the stand in two pieces this morning) we beheld this beautiful, glorious parking spot – I swear it almost glowed. It almost made that chorus-of-angels sound. We had to laugh: just our luck that the answer to our prayers for good luck would come in the form of a great parking spot.
Well, I’m very happy to say that the good luck didn’t end there today. Ladies and Gentlemen: I have great news, good news and no news!!
First, the great news: The CT scan showed no spots in my brain! My notoriously low blood pressure is the cause of my dizziness and I can take a break from worrying about nasty things growing in my brain. I know some of you won’t be able to resist the airhead jokes (you know who you are… Shawn Coppen) so I’ll beat you to it: Finally, we have proof that there is nothing in my brain! And that’s fine with me.
Next, the good news: The lymph node tumours have either shrunk or stabilized! Those one or two lumps in my neck are indeed getting smaller (okay, so maybe this counts as great news!) and the others haven’t managed to get any bigger. Stabilization is almost as good as shrinkage, because, as my oncologist explained, Tykerb/lapatinib gradually stabilizes tumours over time and then begins to shrink them, hopefully all the way to oblivion. So for now, stable is just fantastic in my books.
And finally, in the no news department: Well, it seems there was an error. The analysis of the chest CT scan was compared to an old scan from last year, rather than my most recent scan in August, so it’s no good. My oncologist has ordered a re-analysis against my most recent chest scan, so we can see what’s going on with the spots between my lungs. Reassuringly, my doc says her initial reading is good, but she will call me tomorrow when she has the complete analysis. No news – while not as thrilling as “no new spots,” “shrinkage,” or “stable” – is still good news.
So, I’m massively, tearfully, hugely relieved. And, oddly, also deeply thankful, though I’m not precisely sure to what or whom. But the gratitude I feel is strangely palpable; I can literally feel it emanating from me. Also, I find I’m physically exhausted. Like, knackered. I guess all the tension that I have been carrying has finally been released and my body wants me to let it rest now. Which I will gladly do, as soon as I post this.
Tomorrow is another day – for chest scan results and parking spots – and let’s just hope the luck continues!