Sep
24
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?
Sep
22
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.
Aug
05
I had drinks with my friend Libby the other night. I blogged about her some time ago – in the early days following my diagnosis, she profoundly influenced my approach to being informed and self-advocating, and she continues to be pretty much the poster-girl for the dig-your-heels-in, never-give-up attitude toward fighting cancer. This is a good thing, since she has what is sometimes referred to as “the cancer gene.” First, a few years ago, she had breast cancer, followed unbelievably closely by pancreatic cancer, from which she has very recently emerged victorious. (Or victorious “for now,” she would probably say, her guard ever up.)
Anyway, we had a great time, drinking prosecco kirs at a bar down the street and laughing a lot more than people usually do when the subject they’re discussing is cancer, especially the metastasized and extremely aggressive varieties. But laugh we did – and also swear quite a bit.
One thing in particular that earned a string of extra-colourful expletives from me is that, while I am determined to live a long and full life, I’m angry* that my long and full life will include endless fighting against this stupid* disease. Until cancer research makes some enormous advances, metastases means that I just have to keep fighting, forever. And frankly that sucks. As I said to Libby, “We’re lifers; we’re stuck here with this cancer for the rest of our lives!”
“Yes,” she said, “We’re lifers. And it sure beats the alternative.”
We drank to that.
*not the exact words I used last night
Jul
03
After meeting with my oncologists yesterday we have some answers. Not great ones. Apparently, the cancer was able to grow after so much treatment – and while I’m still receiving Herceptin – because it’s very “aggressive.” Cancers in younger women often are. Thing is, when I was told that the lymph nodes in my neck were positive I assumed they were part of the same lymph node system as the original cancer, but this is not the case. And this is crucial, because this means that my cancer has moved to a new site. It has metastasized.
The M-word. More menacing even than its terrifying step-mother, the C-word.
I have metastatic breast cancer. The cancer has metastasized. Any way I try to say it or write it, it is gigantically overwhelming. C-word + M-word = so, so scary.
It means the cancer is on the move. It travels in disguise and is sneaky and strong and knows lots of martial arts and is hell-bent on killing me, like an evil cellular-level Jason Bourne that has somehow slipped past the defensive lines of chemo and Herceptin.
Basically, at the very least, it means I can never let my guard down ever again for as long as I live. Which is to say they have taken treating my cancer “curatively” off the table and are now talking about “prolonging my life.”
When you are 37 that sounds like a bum deal. Probably it sounds like a bum deal at any age. But my husband and I are still in the early years of life together and our daughter is only 3 years old. She picks me dandelions. She races into my arms. She mispronounces words captivatingly. She has tantrums and is extraordinarily affectionate, like a benevolent dictator. She needs me.
So you know what that means: I need to beat this thing. It means, get out of my way, stupid metastasized cancer.
Next week I’m lined up for a bone scan and CT scans of all my organs to see, well, whatever there is to be seen. Or not seen. Then, we attack.
I sound brave? I’m not brave, I’m scared, but I’m not going to be bullied.
They won’t surgically remove the lymph nodes in my neck because of the risks of this kind of surgery and because they feel they can effectively deal with the affected lymph nodes through radiation. Also because this needs to be treated systemically not just locally. We were originally told that they wouldn’t do chemo because it’s too soon following my last course of treatment, but it turns out that isn’t entirely true. There is a possible chemo option (oh, hateful chemo!) and a very promising clinical trial option, which we’re really, reeeeally hoping I’ll qualify for and be able to start ASAP.
Scared or brave or both, I’m going to do whatever it takes. Yesterday my friend Adam sent me a Bruce Cockburn quote: “We’re going to kick at the darkness till it bleeds daylight.”
One kick at a time.
