Liz's Blog: As the Tumor Turns, Part 10
- Elizabeth Churchill
- Posted March 11, 2013
Editor's note: Elizabeth Churchill began writing her blog in 2006 after a grapefruit-sized tumor wedged between her lungs was diagnosed as a malignant highly aggressive stage IV lymphoma. Before her cancer diagnosis, she was the author of a horticultural column, an avid weightlifter, and a homeowner with a beautiful garden north-east of New Orleans. Once she started treatment, she couldn't work, her relationship with her fiancé ended, and she became so in debt she had to sell her home to pay the bills. Unemployed and with no health insurance, Churchill started writing to keep family and friends informed and herself sane. Here, we excerpt a few of her entries.
So the salient topic du jour over in my favorite corner of the cancer blogosphere this week is emotional meltdowns.
Raise your hand if it comes as a complete surprise to you that an otherwise sane, rational, intelligent cancer patient might occasionally lose it or experience a sudden deflation or explosive detonation of her normal, healthy coping mechanisms, launching her into a dramatic meltdown.
Hmm. Okay, the rest of us will wait here while those of you with your hands flailing around in the air like insane sea anemones stop smoking crack and take a big, fat hit on the clue bong instead. When you're all ready, come on over: It's consciousness raising day here at the Ranch o' Defeated Tumors! Breaking news: Meltdowns happen!
As regular readers know, I am most definitely Not a Trooper. To the dismay of friends, family, medical personnel, and innocent bystanders, I am prone to occasional meltdowns.
So what exactly is a meltdown, you ask, and what are its triggers? Well, let's take a look at three random, but typical, examples from my very own extensive repertoire.
1. Meltdown A: The day after I was diagnosed with aggressive stage IV lymphoma, the man I was in love with and engaged to marry went out dancing, without me, while I sat home alone reeling with terror and shock. He also decided this was as good a time as any to vent his feelings about every little thing I had ever done to irritate him, so he emailed me a long laundry list of my most annoying faults. We lived 90 miles apart, and the next day he sent me another cold, aloof email saying he wouldn't have time to come visit me because he had tickets to a football game and he had agreed to help a friend move. Surely, he insisted, I would understand.
Oh, hell yeah, I understood all right. I understood that just about everything and everybody on earth was more appealing to him that day than me and my newly diagnosed cancer. The emotional pain of this abrupt rejection and the loss of support from the one person I had been relying on most was too overwhelming to bear, and I had a complete and total meltdown that consisted of sobbing nonstop, obliterating my former blog, and refusing to speak to anyone for 48 hours.
2. Meltdowns B-1, B-2, and B-3 all occurred in a single day, so I'm lumping them together here as one. Six days after my first chemo treatment, I came down with the most horribly intense migraine I have ever experienced. This was probably caused by low blood counts, or maybe by coming off of five days of Prednisone. But whatever, the blinding, pounding, stabbing, eyeball-searing pain was so severe it was making me vomit, and neither Vicodin nor Phenergan offered any relief. To make matters worse, I had a routine appointment at the oncology clinic that morning, which entailed a four-hour wait. Stressed to the max, I spent those four hours moaning in the fetal position, packed into in a freezing cold waiting room full of coughing, sniffling, infectious people.
When the oncology resident finally saw me, she decided that my heartbeat sounded hinky and I needed an echocardiogram. This meant I would have another four-hour wait. I experienced meltdown B-1 at that moment, bursting into tears in the exam room, tearing my hair out (literally!) and screaming that NO, NO, NO, I would NOT wait four more hours. I was sick and I HAD to go home NOW. Somehow the poor, panicked resident arranged to schedule an immediate emergency echo, and I was escorted to the cardiology department by two brusque burly nurses to prevent me from escaping Against Medical Advice. (There was already a sticker on my chart announcing that I have a record of acting AMA.)
Anyway, the two young cardiography techs who performed the test resented that this emergency appointment was delaying their lunch hour, and they complained loudly right in front of me, grumbling about me as if I wasn't even there. "I'm starving!" said one of them to her coworker. "Would you rather get pizza or a burrito?" She then ground the transducer right into the tender incision where a chemo port had recently been implanted in my chest wall. "Ow, ow, ow, that hurts!" I wailed, straining not to vomit. "Hold still," she admonished, shoving me back onto the table and still grinding away. The colleague replied, "I dunno, I feel like a burrito, but they'll be sold out if we don't hurry. I don't see why we have to do this echo on her in such a big hurry, since she just had one a month ago." "Yeah," said the other woman. "Hey look, is this kind of enlarged? Do you think we should call Dr. X?" Colleague: "Nah, don't bother, it looks okay. Let's wrap it up. What do you think about those fish tacos they had last week?" And to me: "Just wipe the lube off with your shirt." Meltdown B-2 happened at that point, and consisted of 3 hours spent weeping silent tears of bitter despair, accompanied by a complete inability to speak.
By the time I got home, the migraine was so bad I was vomiting nonstop, and I was also starting to have severe chest pains (which I later learned were probably from the mediastinal tumor disintegrating). I was curled up on the bed wishing I was dead when the phone rang. It was the hospital calling to say that my blood tests from that morning had come back alarmingly low: My neutrophil count was a terrifying 0.04 (the normal range is 1.5 to 8.0). I was in grave danger of dying of infection within 24 hours, they said, instructing me to rush back down to the emergency room at Our Lady of the Damned STAT.
After spending 45 minutes filling out duplicate forms in a filthy, crowded ER triage room full of more coughing, infectious people, the nurse on duty decided that since I was neutropenic, I should be waiting to see a doctor in isolation. He plopped me in a wheelchair and shoved me into a tiny, windowless, 6' x 6' cinderblock cell containing nothing except a fan for ventilation, a harsh, flickering, fluorescent light that was aggravating the migraine exponentially, and a wastebasket that was overflowing with used tissues and a bloody Kotex. He locked the door and left me there for over an hour. Ok now, wait, wait, wait: Can you see it coming? Yes! Yes, you can! Here it comes, right on schedule, meltdown number B-3! And what did it look like? No, don't even ask.
3. Meltdown C: Ok, this one was a doozy. It was the day before Thanksgiving, and two days before my birthday, and I wasn't going to be able to celebrate either. I had just walked in the kitchen door, home from my third chemo treatment, and I was already starting to feel the ground slip out from under me as I descended into that hell known around here as The Big Ick. I had barely taken off my hat when the front doorbell rang. I opened the door and there stood a large, menacing sheriff's deputy, serving me papers to inform me that one of my creditors was suing me.
I was sick. I was weak. I was scared. I was alone. I was broke and the debts were mounting. The chemo was kicking my a-- real bad, and when that frickin' a----- deputy recoiled in disgust at the sight of my shiny, bald head for a second before handing me the papers, I totally lost it. At least I managed to stagger back into the kitchen before I collapsed. I spent the next two hours huddled in a ball on the cold hard floor in a corner of the kitchen, clutching the papers and drooling, my teeth chattering violently as I teetered on and off the brink of clinical catatonia.
I'll tell you the truth: These meltdowns are painfully embarrassing. Even talking about them now, months later when I'm ostensibly sane again, is embarrassing. It's horrible and mortifying to be publicly overwhelmed and lose control. And it's difficult for the onlookers as well. People generally just don't know what to do, and the onslaught of unbearable emotion makes them extremely uncomfortable. I lost a few friends who just couldn't take the fallout from my inevitable meltdowns.
Sometimes people try to help, but their efforts to stop the deafening roar of misery end up creating distance and alienating the meltee. For example: "You should see a therapist," a concerned loved one might advise. Or, "You should get a stronger prescription for antidepressants. You should take up meditation, or yoga, or pray louder." There are several problems with this approach.
For one thing, giving advice always puts the giver in a one-up position, as the wise one who Knows The Answer. It simultaneously puts the givee in a one-down position, as the dumb ignoramus who never thought of the obvious. When I was feeling lonely and adrift, this split always made me feel even lonelier, and it pissed me off as well. Also, this kind of advice pinpoints the problem squarely inside of me, rather than in the world outside. It says that I am the problem, I am the defective one, I am the one failing, I am the one who is not coping properly, who is broken and needs to be fixed. Whether there's any truth to it or not, I just never found this implication to be at all helpful or comforting in times of dire distress.
Another common response to a meltdown was for a concerned onlooker to try to silence my uproar (or end my silence) by trying to rope me into denial, minimizing the problem. "Oh, it's probably nothing!" they might chirp gaily, gazing past the swollen lymph nodes that had ballooned up overnight to the size of hens' eggs. Or, "A 104 degree fever's not so high! Six weeks isn't such a long time to wait for treatment! That enormous needle they're about to stab straight into your bone could be a lot longer! You're going to be fine, you've just got to quit being so negative."
I've bitched about the whole bootstraps-happyface attitude thing repeatedly, but let me sum it up here by saying this: It's tantamount to an American sitting in a nice, safe, suburban living room offering glib advice to somebody who's screaming and cowering in a burning, exploding Baghdad basement. "Don't you think you're overreacting just a bit?" the glib American says. "Sure, another bomb could fall on you any minute, or armed soldiers could rush in there in a blast of gunfire and wipe out your entire family. But you know what, a meteorite could also fall on me any minute, and I could die, too. But you don't hear me screaming, do you? You just can't spend your whole life being upset and freaked out! Now get out there and enjoy every minute you have left with a positive attitude, and stop subjecting us to these annoying meltdowns."
Can you imagine how helpful this would be? Think about it. Sometimes a meltdown is the only sane response to a situation, and maybe just maybe, awful as it is, it deserves a little respect.
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