great stuff

ever just wake up feeling pissy? probably because you went to sleep pissy...probably because there was some combustible combination of fatigue, stress, hormones, and a family tiff colliding to form a perfect storm of discontent? me either. but some of my best friends are pissy...

at the risk of sounding like pollyanna in a white cap, my work is really good for this - for treating episodes of nondescript pissiness. it's virtually impossible to move from patient to patient listening...crying a wee bit (not the hormones - you can't prove it)...talking about some seriously scary shit and not emerge with an altered perspective on your own situation.

today the sadness and intensity were a soothing balm to my mini wounds, somehow filling in the cracks and making me stronger. it reminded me of great stuff.......at our old house, mr. oncRN used to spray this funky foam in the cracks around windows, doors, and any possible rodent portal and it would harden to the consistency of steel - and it was called Great Stuff. if for no other reason than its name, we loved it and denied many a draft and city mouse entry to our house. maybe someone sprayed it on me when i wasn't looking.

of course it can work the other way too. i can start the day put together tightly like a 400 thread count sheet, follow the same patient trail as today, and end up feeling like guaze.
and if you see a loose thread...please don't pull it.

gambler

'guess where i am?'

'on your way in to see me for your appointment in an hour?'

'nope. vegas.'

'reeeeeally. that's funny because after your transfusion yesterday you said see you tomorrow!'

'yeah i knew you all wouldn't think it was a good idea, so i just kept that to myself. i just had to get out - get away, ya know? i'm a risk taker, remember? i told you that the first day you met me.'

'yeah, i remember. but i also remember that you asked us to save your life and you being in vegas is going to make that significantly more difficult. and can i just say that, as a person, i have so much respect for you right now but, as a nurse, you are freaking me out.'

'oh now i didn't call to worry you. i'll be back for my next appointment, i promise.'

'why did you call, then?'

'to find out what your lucky number is. i'm putting down $20 on the next spin?'

'22-red. and never split aces and eights. or something. my husband taught me that.'

'you don't know what you're talking about, do you?'

'not really.'

'well, i'll explain it all to you when i get back. wish me luck!'

click

i hung up the phone feeling mildly indignant for having been duped the day before and at the same time brimming with admiration for this guy that is doing what he has to do to stay engaged in his own life.

i think i was also humming - you got to know when to hold 'em...know when to fold 'em...

god i love these people.

real

i first met her in February. she was preparing to enroll on a clinical trial and she, her husband, the physician, and i met to talk about it.
'she's a fighter, doc', said her husband tearing up and beaming at the same time, "that's why we're still here".
i loved that he linked his own survival to her ability to fight - we're still here.
'you gotta get us to October, doc...it's our 50th anniversary. we gotta see that together'
'we're going to do everything we can...i can assure you of that,' said doc thinking, as i was, that October never seemed farther away.

she had ample opportunity to display that she was indeed a fighter. she had pain that we couldn't figure out along with the constipation and confusion from the narcotics for the pain that we couldn't figure out. she had fevers that wouldn't abate and full body rash from the antibiotics for the fevers that wouldn't abate. she was caught in an all too typical drug / symptom - another drug / triple the symptoms scenario that is so hard to break out of. her leukemia responded well, but the rest of her didn't and she eventually went back to her home state to get less aggressive treatment closer to home.

her husband emailed me her obituary today. 'Her fight is over', he wrote in the subject line. it was a beautiful picture of her in her prime and her wonderful story, so much of which i hadn't known. my instant reaction was a little ache in my stomach when i saw her healthy, and when i realized how we and our treatments had made her unrecognizable. i thought to myself for the millionth time...how can we do this to people? are we serving them? but the rest of his note reminded me. he thanked us all repeatedly for the extra time we had given him with his wife. it was hardly all quality, or life as they had known it previously, but it was as he stated 'a little more life to share with her'.
that's why we do it. that's what we try to give.
it reminds me of The Velveteen Rabbit when the horse explains how love makes you real.

"Does it hurt?" asked the Rabbit.
"Sometimes," said the Skin Horse, for he was always truthful. "When you are Real you don't mind being hurt."
...
"The Boy's Uncle made me Real," he said. "That was a great many years ago;
but once you are Real you can't become unreal again. It lasts for always."

witnessing the love of devoted spouses... holding hands through the darkest hours...sitting vigil ...praying...crying...sobbing...laughing...saying goodbye...letting go.
just being a part of it makes me feel real.

i hope it does last for always. i don't ever want to become unreal.

worry

Dear young oncologist,

Please banish this response from your repertoire,

"We'll tell you when to worry", complete with a sympathetic smile and a pat on the knee.

she's 38 and has 3 children and in incurable leukemia, you as her physician are not in control of her worrying. of course she'll worry no matter what you say or don't say, no matter how she responds to treatment - she'll worry. it's neither insightful, nor helpful, nor therapeutic to suggest that she shouldn't or that you are capable of relieving her of that. it's patronizing and paternalistic and lazy. don't you see that?...that sinking in the eyes and the spirit when she brings up her deepest fears and you shut her down with a superficial canned remark like that?

i hope for you that your humanitarian side will catch up with your intellect and that you will soon know, instinctively, that is just not a kind thing to say. and if you misspeak, as we all do sometimes, that you will catch yourself, backtrack and say 'i'm sorry, that was a silly thing to say. tell me what you are worried about.'

sincerely,
a concerned oncRN


*** i did attempt to bring this comment to the onc's attention. kindly and diplomatically, i thought, i told him, 'you know in my experience it really rubs patients the wrong way to tell them not to worry....etc' he had no ears for that and didn't appreciate the tip. and i'm pretty sure i saw him adjust his pants, and puff out his chest a little, and all i could think of was this. oh well, all you can do is try.