Chemo With Friends

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Chemo With Friends

By Audrey Fox 07/21/17

I didn’t want to live withdrawn in a perpetual haze of nausea. I didn’t want to lose my hair. I didn’t want to wither away. At least I wasn't alone.

Image: 
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Better together.

The first time I heard about the Promises I was counting days and, like many, heard precisely what I wanted to. My primary filters—instant gratification and entitlement—caused me to hear things like “economic insecurity will leave us” and some variation of “God will finally do for me what I’ve always wanted.”

The actual wording of the Promises was frankly of little interest to me, preferring selective interpretation to nearly all reality at that time. Throughout my recovery, however, that which I had initially prioritized—little responsibility, unfettered freedom, some carefree existence and unearned advantage—was not at all the landscape that unfolded. Instead, my recovery has afforded me the ability to meet reality realistically while still wishing to exist within it; to surpass the limitations of any given circumstance, and instead meet those challenges with grace.

The Promises are one of many major respects in which I have been so blessed to be so wrong. If I had only received everything I thought I wanted from sobriety I would have sold myself seriously short. The limitations of my imagination are laughable in the face of some transcendent wisdom, or divine orchestration never fully knowable for the enduring barrier of my humanness, doomed to forever blind full understanding of that which may seem fulfilling and that which truly is.

In a previous article entitled “On Prayer and Chronic Illness, Sober”, I wrote about the ways in which this year has taken a number of unpredictable turns. At the time of writing that piece in April I had just heard that I would be undergoing a course of chemotherapy for a recently diagnosed autoimmune disease. In the space between then and now my mortality and its terms have been frequently called into question, making for further unpredictability within my personal life. And yet, I’ve been afforded some continual ease, an ongoing redefinition of a Promise-filled life, and a depth of patient contentment too profound to be credited as anything shy of God-given.

“You’re going to need to get this shot monthly for your ovaries – you may not want children right now but, this’ll give you the option later when you change your mind.”

“Really though, children aren’t a priority – like not on the list – ”

“ – again, we’ll do it for now through the next six months to a year. I’ll put in the order.”

I had never thought about having children so much as when the capability was threatened. The news was delivered by my nephrologist, deftly phrased as,

“You’re looking at diminished life expectancy and infertility.”

After a beat he inquired as to whether I was alright, and then we had a quick chat about bedside manner.

Before my first chemotherapy session I grew petulant and panicked. I remembered my grandmother’s chemo, and my grandfather’s chemo, and my grandmother’s subsequent rounds of chemo for the next 18 years until she passed away. She was full of an abiding light and great depth of love, but physically frail and emotionally exhausted by all of this treatment. While I would count myself blessed to be half the woman she was, I was still only in my 20s, and figured life might be more difficult at 2’5”.

I didn’t want to live withdrawn in a perpetual haze of nausea. I didn’t want to lose my hair. I didn’t want to wither away. I wanted to negotiate –

“What would happen if we didn’t do chemo? Is it essentially a non-option to avoid it?”

“I think your kidneys would continue to worsen – transplant, dialysis, death.”

– but he’d drawn a hard line.

There appears a projected hierarchy of gravitas per condition, unscientifically and as such more plainly damning than something you’d ever hear endorsed by the AMA; think more a dodgeball-like team selection entitling a patient to the parameters of their pain. You hear “cancer” and know what it looks like, seeing myriad representations and likely having second- or third-party personal exposure. It has a face, and it has a name. Most anything shy of that elicits confused pity, or my favorite rider: “at least it’s not cancer.”

In a way it would seem a strange albeit backward relief to have something more common, yoked with fewer questions and unsolicited opinions from persons attempting a degree of authority – their takes shared as presumed parallel situations to sound as though some mastery was born from their labors of dedicated attendance. Atop that lies but a gossamer barely veiling only an affectation of assuredness: an un-claimable confidence never theirs to wear, all aimed at feigning an impossible sense of control.

Of course this grappling makes it entirely human, and by that turn also a petty pursuit most striking to those for whom this experience is entirely novel. It’s rather odd to receive life-changing news only to then walk in on a sort of pain pissing contest; one that started long before you got there, despite neither party’s desire to actually arrive.

"I don't know how I'm supposed to rest, it's so noisy here. I was resting and then some young folks came up talking loud and laughing – "

" – because they're not dead, yet."

An elderly woman, we’ll call her Enid, is speaking with her physician bedside. She was born in 1921. It’s a long drive from where she lives with her son to the hospital. She has lived an infinitely more interesting life than I have and yet, we’ve both found ourselves in the same place, and on the same medication regimen.

After graduating college she took up work as an undertaker per family tradition, and married like a good girl did in 1939. During World War II she served as a bomb girl at a local munitions factory, filling shells with TNT.

After dropping out of college I worked checkout at an Hasidic audiovisual shop, but that only turned incendiary when I refused my manager’s proposal of expatriation and immediate marriage.

Enid and I have a lot in common. I’ll see her again next month.

A new attending turns to me with the typical questions preceding an infusion – weight, blood pressure, temperature and so on.

“Is this your first time getting chemo?”

“No.”

“Pain today?”

“No.”

“Any falls?”

“No.”

“Signs of infection?”

“No.”

“Have you traveled outside of the country in the last six months?”

“No, nor do I intend to in the next six months.”

“Alrighty, sounds like you know your way around. Any med changes?”

“Yes, a few – ”

A foolish misunderstanding underlies the recovery experiences of most newcomers, namely that we are only responsible for our attitudes and actions when our course is satisfactorily set. We hear of fellows navigating remarkable difficulty with care, reserving of course the selfish assurance that that person is not us; that theirs is a reality we need never seriously consider. Or maybe one better – that our initial misunderstanding of the Promises will manifest defiantly true, proving to AA rooms the world over that our entitlement, our terminal uniqueness, has indeed always been justified. We are happy to practice these principles in all of our affairs, be of service, exercise rigorous honesty, and “live in Ten, Eleven and Twelve” when things are going well. Frequent are the media depictions of life-altering news, medical or otherwise, being met with an excused negative action: “of course he / she drank / cheated / missed work / etc., he / she just [fill in the blank.]” The fantasy appears to be total abandonment of responsibility as reward for enduring a bad experience. But here is the perhaps unfortunate news: there is no adequate fill-in-the-blank.

I’m sorry.

“I tell ya Audrey, those medical conferences used to really be something – I once went a whole two years using only Viagra pens. They gave me fifty – FIFTY Viagra! I once had a guy who said he couldn’t get the ballpoint to drop and we spent all summer giving him hell! Like he was the only guy with Viagra who still couldn’t get it to work! Now you’re lucky if you get a damn notepad. Everything’s goin’ down the tubes. The restrictions on us now…when I started nursing

20 years ago, E.R. triage? We could do whatever we needed to, on the spot. Docs would back us up later. Now you can’t do anything without running it past a whole damn town first. Ah! Listen to me gabbin’ – let me grab some PPE so we can get started. You want one of those face shields you like?”

Of course, we can technically do whatever we want, insofar as every action affects a consequence, regardless of whether or not we accept this fact. When I was younger I believed that the opposite of responsibility was freedom—that as long as I had duties and obligations I would never experience true independence. This notion of sovereignty was chiefly informed by watching Thelma and Louise drive off of a cliff, without subsequent consideration that of course they died; and Lynyrd Skynrd’s “Simple Man”, likely mind-melded with some snapshot of Springsteen waving an American flag.

What time took to teach me is that taking responsibility for oneself – regardless of whether the affecting consequences were caused intrinsically or extrinsically – remains the access point to freedom and the gatekeeper to a Promise-filled life. It would probably be easier to sit back with this, shirk ongoing responsibility, participate minimally and at best cooperate. I could probably carry off an entitled and woeful attitude. Maybe those closest to me would give me a pass, writing off bad behavior for amount of undergone stress, chalking it all up as temporary. And yet there remains a part of me that inherently sees my conduct at my worst as most qualitatively representative of the content of my character and substantive solidity of my spiritual life.

May this not be misunderstood – there is no expectation for or requirement of my liking an unfavorable circumstance. Masochism is not necessary. And yet, were my liking something the only checkpoint for whether or not it deserved my full faculty and attention, I would likely only ever be watching 30 Rock while eating Nutella with a spoon. After all, one must dress.

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