Not How It Was Meant To Be.

My mom’s cancer diagnosis has turned into my own waking fucking nightmare in every possible way. In the beginning, In the very beginning, I committed myself to going through her treatment regimen  with her, as a supportive and constant and compassionate presence for her to depend on. This was when she was living at home, before she got pneumonia, when she was still fairly physically mobile and very mentally capable. Since the ICU, everything about my mom’s situation has been altered abruptly and uncomfortably for me.
Suddenly, she can’t go home to her own house because it’s not safe for her to be there for various reasons respective to her ability to heal from chemo and now, pneumonia as well. This doesn’t even take into account, the C Dificil infection she is barely recovered from, either. Nor,  does it mention the 12 tanks of oxygen needed at all times now. I haven’t been able to sleep for going on two weeks already, and I feel like tonight  (the night my mom is released from her scary hospitalization) marks just the beginning of a fucking living hell. It has already begun. I am sitting in the kaiser parking lot fuming while the pharmacy fixes the nurse’s fuck-up on my mom’s meds so that we can finally get the fuck out of this horrendously miserable place. But its not as if that means anything to me, though, as its the aftermath of all this fucking bullshit that’s probably going to drive me to fucking kill myself, or die of a massive fucking coronary. The stress and pressure of so much misdirected responsibility is fucking immense, and I do not appreciate any of what’s happening at all. After this absolutely chaotic and miserable experience of becoming a full-time caregiver to a mother who is meaner now than she ever was, I will no longer be willing to be the compassionate person I wanted to be. I no longer want to bring my mom to all of her appointments and support her like I committed to, not when I’ve somehow been forced into becoming a fucking full time caretaker. This is fucking horseshit. I understand people cant prepare for things like cancer, but I am absolutely disgusted by the absolute lack of planning whatsoever for simply the event of a serious medical emergency or basic aging. As a result of her poor choice in a “mate”, her total lack of any kind of organizational skills, and her obsessive compulsive lifelong  hoarding, I have suddenly and completely been thrown into the very unwelcome role of being THE ONLY person to CONSTANTLY care for her like I am a personal fucking nurse. The worst part about all of this is that my mom is in full blown denial about everything. She is delusional. She is mean and shitty to me as I bend myself into a pretzel to not leave her on her own, as she will be without me. THIS is NOT how I want to remember her; I did NOT want to grow even more embittered and resentful towards her at the end of her fucking life. But guess what? It didn’t matter what I wanted when she was healthy; and it matters even less now. My stepfather literally disappeared, she cant find him and he has not seen her once since she got put into ICU. She suddenly wants to divorce him (though, understandably) but who do you think has to take care of all that paperwork and emailing, lawyering and mailing, etc? Mom sure can’t. My brother has been useless, as have any and all of my mother’s siblings save for one, who is only around at random and when her hair looks good or whatever; she does this so she can rub in my mom’s face how healthy she is. I don’t really like her, never have. And really, she hasn’t been here to help with my mom at all when I really think about it, she went ahead and had Xmas at her house (a 45 min drive from mine) and insisted we come, which was Hell. She says things like,

“You are so capable, you can do this, you don’t give yourself enough credit…”

She says these things to me from the other side of her champagne glass with her pinky finger stuck in the air, standing in her massive kitchen, built on a sprawling winery property that she owns. She says this to me as I am worrying nonstop about how I am going to pay rent this month, as I have not worked since my mama’s diagnosis, being so directly tied to her treatment and subsequent rapid decline.

Hum In The Air.

Traveling swiftly,
along in between,
the shuffling feet,
dropping and lifting,
to static frequencies,
over the threshold,
off of the streets,
into the bustling,
and humming,
of a million machines,
fostering,
the very needs,
of broken human beings…
over the sounds,
of the technology,
tubes and dressings,
Hallmark blessings,
I hear her breathing,
ever-steadily,
in the darkness,
over the chorus,
of the ticks, clacks,
hisses and beeps,
she breathes her way,
through the night,
thankfully,
to see another day,
that she’d preferably,
rather not even see,
which is sadly telling,
told by the many injuries,
outside and within,
the broken bones and skin,
all of the gods damned,
technologies and,
cures known to man,
won’t change anything,
the hand,
she’s been given,
the Hell,
that she must live in…
this was once my baby,
and she will,
always be,
worth so much more,
than what she perceives,
as reality,
no hope anymore,
of something in store,
hidden from the sight of me,
I hold my breath in,
unintentionally,
if I fail to register,
rhythmic machines,
over it all,
the patients in the halls,
the button to call…
the sound I faintly hear,
here and there,
along a stream-flow,
of the hospital air,
it’s dull and low,
but a sound I know,
all too well,
it’s the rewound,
haunting sound,
high-pitched,
helium,
voice to the face,
of my baby,
saying things like,
“Mommy please help me.”

“Every rule has an exception. Especially this one.”

Anomalous”, an “exception”, a “phenomenon”; these are all things I have been called in the medical community throughout my recovery from a near-fatal attack over ten years ago.

The “anomaly” came into play during the initial sweep of MRSA that ran through the ICU and burn units, claiming the lives of two patients and yanking many others into the circling of the proverbial drain for months afterwards; I was, once again, somehow spared death at that time as well, despite the many open wounds that left me like a sitting duck for the infectious riptide. Immediately following exposure to the initial strain of MRSA, twelve out of nineteen of the patients there, in my particular unit, broke out with the Shingles (a strain of it that is STILL with at least two of them, to date). Again, I was “unscathed”. It’s important to keep in mind while reading this, that I was unconscious for the better part of 3 ½ weeks straight upon arriving and being rushed into emergency maxiofacial/vasculature surgery – it’s not as if I even had a clue as to what was happening afterwards, in the unit. I wasn’t putting up any conscious fight against anything…that entire period is dark for me, and I carry no recollection of it now. Either way, it was then that I received the medical file label of “immuno-anomalous”; a label that has stuck with me ever since that time – only to be elaborated upon by other surgeons, doctors and various medical professionals in the days to come.

Next was something wonderful: ‘Raynaud’s Phenomenon’.

This is a very strange condition in which cold temperatures or strong emotions cause microvascular spasms in the fingers, nose, and/or toes. Doctors rarely see this condition – it has a very, very rare (identified, at least) occurrence in the world; thus, is difficult to get properly diagnosed, much less treated. I nearly lost all ten of my toes on two separate occasions due to Raynaud’s;

  • Once, before getting it diagnosed accurately, when a doctor came through on his rounds and basically told me that my toes were so gangrenous that they would need to be amputated;
  • Again, before getting it properly diagnosed, another doctor came through on his rounds and said that they wouldn’t need to amputate, because my toes were shriveled into raisins anyway, and would soon “come off on their own” (that was on my birthday, by the way). Happy fucking birthday – you’re toeless!

Either way, I managed to keep my toes – all of them – to the absolute shock and surprise of all of us…I’M still not even sure how that happened without medical interaction – my toes DID literally look raisins for about a week. But – “phenomenally, they bounced themselves back to bloodflow…”, according to the treating physician at the time. And so, was born: “the Phenomenon”.

Lastly, but most sticky, has been “the Exception to Every Rule of Medicine”; a quote, verbatim, about me from a seminary speech made at Stanford Hospital during a retirement celebration thrown for my original reconstructive surgeon – one amazing individual – when he was asked if I was the reason behind his “early retirement”. So many other people from the Medical community were there to hear an esteemed and well-respected old-timer say such a thing, that I will likely NEVER live it down.