I’m knocked out with a nasty cold right now, courtesy of my daughter and husband (jerks.) And my medical oncologist still hasn’t called me back yet (jerk) about whether or not I can take vitamin C and echinacea with these new drugs. And my laptop keeps freezing (total jerk) and overall I’m just in a foul mood. In the comic strip of my life there’s a little black cloud of crankiness speckled with cold-germs surrounding me as I shuffle around with my teacup and bad hair. I am really unpleasant right now. Like, ready to kill someone because I don’t have slippers — as if that could possibly be someone else’s fault. How is it that I can handle cancer (biggest jerk of them all) with a sense of humour, but a cold makes me demonic? I think my best option is to get back in bed and scowl at the world from under my duvet until I feel well enough to be nice again. Or at least well enough to stop with the name-calling.
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I have noticed, ever since the cancer began colonizing other territories in my body and the M-word became affixed to my C-word, that I am sometimes treated just a little bit differently than before. It’s subtle — like an almost imperceptible shift in barometric pressure — but it’s definitely not my imagination. Of course people don’t actually gasp or recoil, but sometimes they get all somber and earnest, imploring me to stay as positive as possible and to believe in miracles. Wouldn’t that make you feel, I don’t know, a little weird? A little paranoid maybe?
This doesn’t just happen with the insensitive or uninitiated. I get bumped to the front of the line for visits to the cancer shrink at the breast clinic, which is great, but I have to wonder why I’m being treated like cancer royalty all of a sudden.
And there are other, more alienating experiences: I was being screened for a breast cancer support group for mothers of young children and it turns out I can’t be included because of the metastasis. As they very cautiously explained, none of the other mothers have metastatic disease and group dynamics can be “delicate.” In other words… what? My presence might freak others out because they’ll project my presumably horrible fate onto their own experience? Or I might jump up and tell people that they don’t know from scary? Really, what?? I do understand that it is always better to have a population of people with similar experiences in these kinds of groups. But still, it made me feel like I had unwittingly morphed into a different species entirely.
These things, subtle though they may be, all contribute to the feeling that something (besides the cancer) has changed or shifted since my disease metastasized. Like I’m becoming faintly translucent in bright light, or something. And I don’t like it, not one bit.
All cancer is crap, and the sneaky, shape-shifting, nomadic nature of metastatic disease makes it extra crappy. But even though my cancer hasn’t exactly been responding well to treatment so far, I know I’m going to beat it. They say it is “not curable,” only treatable, to which I say, bollocks. Of course it’s curable. They are coming up with newer and cooler ways in which to smash metastatic disease until it’s finally crushed, once and for all, like a nasty and unworthy insect under the 4-inch heel of my cancer-defying awesomeness.
However, until that happy comic-book ending comes to pass (and it will) I have to live with metastatic breast cancer. I know I have a serious form of cancer and that, because it’s on the move, I have to fight it constantly and indefinitely. I accept that I sometimes need help with things I used to be able to manage myself. I freely admit that I get really scared sometimes (mostly at night) and I have to chase the boogeyman away and regroup. These things are all true. I’m not in denial.
But I want to strike a deal with the world at large: Please don’t stop with all the help and prayers and good thoughts and love and certainly not with the soup. Please keep encouraging me and supporting me and telling me I’m courageous, because it actually helps me to be courageous. And please, don’t look at me like I’m going anywhere anytime soon. Even if you think I’m delusional (I’m not) and I’m not going to live (you’re wrong) I ask that you suck it up and fake your way through the most convincingly positive attitude you can muster. Use the Stanislavsky method. Whatever. Just don’t let me catch you looking at me like it’s only a matter of time, because if I’m supposed to believe that I can get through this (and I do) it helps if everyone around me believes it too. Or at least acts like they believe it.
Besides, for whom isn’t it only a matter of time?
A friend of mine recently told me that when I talk about cancer, she gets a little lost in all the medical terminology and references to different kinds of treatments. It’s a slippery slope, and I can see now that I have slid it. To make amends for my spouting of esoteric mumbo jumbo, herewith, a Cancer Primer:
Cancer Strong contender for Most Terrifying Word in the English language; also known as the C-Word, the Darth Vadar of disease, and “the little word with the big stink.” Meaning: A disease that involves abnormal or uncontrolled cell division. Basically your good cells get overtaken and/or crowded out by bad cells. This doesn’t happen because you did something wrong, no matter what anyone including that nasty little voice in your head tries to tell you.
Metastatic Breast Cancer (Also, “mets” in cancer-lingo.) The scary, hairy, foul-breathed boogeyman of breast cancer. It means your breast cancer has spread to other parts of your body. But it is still called “breast cancer” no matter where it goes (bones, organs, lymph nodes…) Imagine you are Turkish, and you visit Newfoundland for some whale watching or, God forbid, turbot-fishing. You are still Turkish. You are not considered Canadian just because you came to Canada for the fish. OK, so perhaps this analogy is a bit obscure. What I’m saying is, it’s not that your breasts have travelled to your liver, but that the invading cells are the offspring of the original trouble-makers. When this happens, they just add the M-Word to the C-Word and voila! Your C-Word gets cranked up a few stages (see “Staging” below.)
Biopsy This is when they physically extract suspicious cells from your body and send them to a lab for questioning under a microscope. They have lots of different kinds of biopsies, some of which are less unpleasant than others, but eventually you’ll get an answer. Oh yes, you’ll talk, little cells… You’ll sing like little cancerous canaries…
Pathology The specific nature of your disease as defined by the characteristics of your cancer cells. Some breast cancers are related to hormones, some are not; some breast cancer cells have certain proteins on them, others do not. The lab identifies exactly what the cells are made of so the oncologists know whether to use the medical equivalent of numchucks or molotov cocktails. All breast cancer cells are stupid jerks, you don’t need a microscope to see that.
Radiation I think everyone has a basic idea of what happens with radiation – you nuke the cancer. In a localized, laser-beam sort of way. Check out “radiation” in the tags for more details.
Chemotherapy Ah, notorious chemo: the bald-making, sick-making, cancer-killing drug therapy. Actually, not all chemotherapies make you bald and many are much improved in the sick-making department too. They’ve come a long way, baby. And they’re not all administered by IV drip, either – some (like my capecitabine) are pills. Think of chemo like an army that goes in and wipes out everything good along with everything bad, with the intention of rebuilding the good stuff later (this usually works better in chemotherapy than in Bush Administration foreign policy.) The somewhat arbitrary attack plan explains hair loss; if chemo drugs are designed to attack fast-reproducing cells – like cancer cells – they’ll knock out hair cells too. Hair loss can be an incredibly devastating, psychologically debilitating, massive downer. You look in the mirror and see “cancer” looking back. On the upside, people will give you their seat on the bus and eventually, the hair grows back.
Targeted Therapies These newer cancer treatments are less arbitrary than chemo, and more targeted to the specific cellular stuff happening with certain cancers. For example, they may work in conjunction with chemotherapy to deliver the toxic drugs directly to the cancer cells (smart-bombing) or they may be designed to prevent the tumour from developing the blood vessels it needs to feed itself and grow. Let’s all just take a moment here and be collectively creeped out that tumours develop blood vessels and feed themselves. Seriously. It’s gross. It’s like something from a Ridley Scott movie.
Staging This is when they measure your cancer and kind of rank how bad it is. Not that anyone ever says “it’s somewhat bad,” or “it’s extremely bad.” They will just talk about how much it has spread, how big the tumour is, where it is in proximity to organs, etc. Stage 0 cancer is called “in situ” and means it hasn’t moved one little bit, and Stage IV is the big M. People sometimes also talk about “high grade” and “low grade” cancer. This is another measure of the likelihood of the cancer to move around or otherwise become a greater pain in the a**. In addition, you’ll hear about things like “triple positive” or “double negative” cancers – this isn’t a measure of the extent of the cancer but of its nature (estrogen, progesterone or HER-2 positive or negative) so don’t let it freak you out.
There are many more terms in the cancer lexicon – far, far too many – but that, I think, is enough cancer talk for one day.