1. constant; habitual; inveterate: a chronic liar.
2. continuing a long time or recurring frequently: a chronic state of civil war.
3. having long had a disease, habit, weakness, or the like: a chronic invalid.
4. (of a disease) having long duration ( opposed to acute).
I have never liked the word chronic. It’s like dust, paper, trash in the middle of the subway tracks, like the puddles in the city. It just sits there. And sits. And sits.
When I first learned that the Death Star had set up its boob orbit, I immediately wanted to know how to blow it out. Slash and burn, put the damned thing behind me already. I had mentally prepared myself for a year of messiness; and because it was essentially finite, the journey from Point A (discovery) to Point B (acceptance) was relatively short. And then things changed quite abruptly. The shift from acute to chronic disease has been particularly difficult. I’m a bit taken aback by the challenge this presents. The one way I have endeavored to adapt is to focus on the concrete.
My first reaction to the reality of a diagnosis of metastatic breast cancer was to tighten the grip on my healthcare. Where before the fax that was dropped or the office worker who couldn’t connect the dots was an annoyance and relatively easy to ignore, now that became critical. I have no tolerance for short cuts, workarounds, or incompetence on any level.
Then I raised the bar on my physicians and gave them no quarter. I obtained the oncology consult that included the report of a full physical exam that was reported to my other physicians–yet it wasn’t true. There was no physical exam that would allow her to report on lung and heart function, the only thing she looked at was my breast. It was rife with errors, including a note that I had a tonsillectomy in 1953. I wasn’t even alive in 1953. I refused to start hormonal therapy before any baseline blood work was obtained; indeed, she said I didn’t need it. Um, don’t you want to see how my ovaries are functioning, check my iron levels, liver function? Hello? Anyone home? Add that to the oncology unit’s disregard for the patient as the center of care and the physician was history.
I have further endeavored to understand the disease itself, but it’s a challenge. So much is focused on the world of pink ribbons, prevention, and Stage 0-Stage III cure (and very little mention that any stage can turn to Stage IV) that metastatic breast cancer is usually swept into a dark corner where it can be overlooked.
It wasn’t until I read blogs of women diagnosed with Stage IV breast cancer that I even knew it wasn’t necessarily a hasty death sentence. It is through them that I see women living years, decades even, as they manage their disease. But who the hell wants to manage cancer? Talk about disbelief.
I feel like the doleful Ebenezer Scrooge when he tried to convince himself that he imagined Marley’s ghost. Wrapped in chains and ledger books and bank boxes, Marley asks his old friend: “Why do you doubt your senses?”
“Because,” said Scrooge, “a little thing affects them. A slight disorder of the stomach makes them cheats. You may be an undigested bit of beef, a blot of mustard, a crumb of cheese, a fragment of an underdone potato. There is more of gravy than is grave about you, whatever you are!”
But the specter of metastatic breast cancer is all too real. I’m not in denial. I’m just not sure how to cope with it. On one hand I’m not “sick” in the generally accepted sense. I’ve got a tumor in my breast, a lesion in my lower spine, and cancer cells in my body. I’m taking Tamoxifuck to block the hormone receptors in the cancer cells. It makes me fatigued, I sometimes can’t focus on what I’m doing, and I want to sleep a lot, and my joints hurt and that actually makes it difficult to hold things because of the pressure that puts on your shoulder and elbow, I have a persistent low grade back pain, and I walk slower now. But no one can perceive those things. To someone who wouldn’t know the whole story, I could be someone who is under performing, fat and lazy, or wholly indifferent.
I struggle with self-identification so that the cancer doesn’t define me, but it’s not easy. For example, it would be totally acceptable to say to a class that I am dismissing 40 minutes early, “Folks, I’m coming down with a bad cold and I have to cut it short tonight before I fall over.” But it would be theatrical and morose to say, “Folks, I’m being treated for breast cancer, and I have to cut it short tonight before I fall over.” “Breast cancer” is hidden and locked away in polite society; now I have “health issues.”
And I’m not sure how to plan anything. After a week at the office I need a day and a half where I do nothing but crash. And when I’m at the office I run at quarter speed and am a quarter productive. Big projects sit on deck, deadlines loom, and I wonder how it will get done. Because in the real world, “Honey, you have cancer and you need to rest” doesn’t play out when, as my boss said, “People are counting on you.” The big, big boss just had surgery and came in with his drains intact, so I’m not going to be given any quarter. It would just be my luck that I’ll be the one academic who gets fired from a place where no one ever gets fired. (No pressure, my ass.)
[Just a note: I am just blowing off steam. The reality is that I do have a largely supportive working environment. This is the pressure I put on myself.]
I don’t always want to talk about it, either. In addition to my full-time job, cancer has now become my other full time job. Staying on top of doctors, self-education, navigating the systems before you–it’s the only other thing you’re doing so my subject matter of general discussion has been limited. I don’t want to keep talking about breast cancer all the time–that’s why I blog. What a downer. Seriously.
When you live in the city, every street corner has a spot where water collects and never dries up. We could be in the middle of a 90-day drought, and that puddle will be there every single day. Sometimes it has leaves in it, cigarette butts, or trash. Sometimes it’s clear and sometimes it’s got white cloudy stuff in it. Sometimes it’s odorless and sometimes it’s beyond foul. But it’s always there.
And I’m thinking that the management of metastatic breast cancer is going to be a lot like that perpetual puddle.