Ascites: I am a cancer blister

Ascites fluid
Four liters of ascites removed from my abdomen – ascites fluid builds up in my peritoneal cavity 2-4 times a year
Stanford Cancer Center
Setting up for the periocentesis: some local anesthetic, an incision in my lower right abdomen after the ultrasound.
Periocentesis
Getting the tube placed for maximum drainage it’s inserted in the safest place to avoid punctuation of my intestines.
Periocentesis
Getting the first draw for the lab, then gravity does the work into what looks like little beer kegs.

I first experienced ascites when I was diagnosed with metastatic breast cancer, de novo because of dense breasts.

It’s been:
3 years
7 months
22 days
5 hours
55 minutes
32 seconds
to be precise since first having 7.5 liters of ascites removed and the reason I showed up at the hospital about 15 pounds heavier than my usual weight, barely able to breathe, unable to hold down any food and scared as hell.

Prior to that first visit I’d been delivered to the hospital once, when I was born. Quite a different story 49 years later. Since the first periocentesis to remove the cancerous fluid, I’ve blown up like an oompah loompah seven additional times, including this last time illustrated by my clandestine photography here.

This is what metastatic breast cancer looks like. Not on the days when I am trying to make everyone believe I’m okay. It’s not that I mind looking like I don’t have cancer for the most part. But I don’t put my makeup on every day to prove a thing to anyone but myself. I push too hard most days. Never will I learn to take it easy.

Sleep is for the dead. It’s 5 am. I’m still awake.

My Struggling Ugly Days with Metastatic Breast Cancer

Everyone says to me that I don’t look like I have cancer. But I do have cancer. And there are days when I feel like I have all the cancer in the world. Today because of some screwup, I had been out of my pain medication for close to 48 hours. I take opioids daily to function and to have pain relief from the red ants crawling around my ant farm bones, biting my insides where you can’t see me.

I also take opioids to relive my abdominal cramping and pain from a continual battle with ascitic fluid in my abdomen, which I’m having drained again Tuesday morning and was supposed to have labs for today at Good Samaritan hospital, but I couldn’t drive. I couldn’t get to my palliative oncologists appointment either. My plan was 1. appointment and 2. blood draw, 3. then home. However, I came to find myself locked in a week long pharmacy-doctors office-nurse-communication struggle to receive these certain classifications of medication. I hope you never have to know the pain and suffering of metastatic cancer and the withdrawals associated with 48 hours of being out of your opiate based medication.

My beautiful angel friend and neighbor of 10 years had to see me like this today. I had to interrupt her busy day for this errand to get my medication. And she’s a terrific single mom of a terrific kid who I’ve seen grow up into a fine, happy, helpful and wonderful adolescent after 10 years. But to me he’s still the infectious giggling little boy. Only due to her being an awesome mom.

Yet today I know I scared her. I gave her my wallet and called Walgreens and she was visibly nervous. This is an ugly troublesome facet of my disease and a side reserved for my private hell. I do not even let Craig see me this way. Simon, seen here giving his mommy mouth to snout resuscitation, and love and kisses and trying to wake me up to feed him which I must go do, is the only one who sees me like this.

But I’ve decided to share with you the ugly side of metastatic cancer. The painful side. So, based on my no bullshit blog policy, I’m sharing selfies so that next time perhaps you’ll refrain from wanting to say to anyone with metastatic cancer, “you don’t look like you have cancer.”

Canferatu: The Prequel

In which our heroine finds herself clutched in the monster’s filthy, razor sharp claws, afraid for her life.

Introduction: The scripting process begins and ends

This narrative slowly opens and possibly took several years for the writer to realize the finished script. Editing the story of a life continues beyond publication, past the timeline of those who inspired the characters themselves. Those millions of words, her own and the voices of many others, became nothing more than ash made by trash bin fire. The wire mesh bin sat next to a solid oak beast of a work surface, the top ringed by years of too-hot coffee cups, and covered in a tablecloth of loose papers. A cracked black leather swivel chair sat empty and pushed back and turned away from the monstrous kneehole desk. On top of all the remnants of the writer squats an old black Corona typewriter, its clacks and clangs silent, it and the room gathering dust with every day since it’s author began her lifetime leave of absence.

Three years ago she abandoned a life of of golden accolades and long, meandering plans for future gambols. Three years ago, she traded the promise of generally uplifting experiences for the protracted life of a victim, incarcerated in her own body for crimes no one could pin down to a single suspect. Lately she looked weighted down by absurdly heavy fatigue. Additionally, without any real past precedent, she began to catch many uncommon colds and any new flu of the present season. Never before had her immunity left her body so unsecured and without patrol. It seemed illness had cracked her genetic health code. Our author’s body felt like someone else’s, although outwardly it looked exactly like hers, other than bluish circles around her eyes. As her story unfolded, she assumed these symptoms had to be a sign of work burnout and too much step-parenting stress.

Cortisol, a result of stress, certainly played a key role, aiding and abetting the ghoul who committed the ultimate crime against her, in an inside job right under her skin. Regretfully, she paid minimal attention to the diseased monster on a million-year long crime spree, taking women and even some men to an early grave, but not after draining them of their life force and absorbing it into his own body, which made him stronger with each new victim. And the shape-shifting monster metamorphosed to outsmart even the savviest of detectives who aimed to catch this predator once and for all. With each new case, the authorities found some new twist or turn to throw them off of his scent. He reeked of death.

A malcontented criminal, he tortured her unmercifully then leaving her alone, broke, and without empathy from anyone. This vampiric disease sucks the life out of its victims, some slowly, and some very quickly, but all losing their lives to the waking nightmare itself. In her case, she wrote the screenplay, acted the starring role, and eventually scrapped her success for a slow decline towards failure at the fangs of Canferatu, or the Vampire.

Part II. Oh, no! (Everything changed overnight )

One March night, I curled into the fetal position in the middle of our bed, sweating and wailing. I suffered from extremely severe abdominal cramps from what we thought was a case of bad food poisoning. My husband, Craig, finally demanded I get into the car and go to the hospital. He physically put my body over his shoulder and got me into the cloud like front seat of his Jaguar and pulled the seat belt around me. This, only after his heart sank as he watched helpless. Inconsolable and with huge tears bursting from my eyes, I screamed at him, “there is no way I’m going to the hospital! I’ve never been to the hospital! I’ve only been once in my life, when I was born and I’m not going!”

On the other side of the looking glass, this Alice awoke the very next day in a bizarre alternative universe. “You have metastatic stage IV breast cancer and ascites fluid build up in your abdomen.” Everyone around me looked stunned. Everyone who called to check up on me went silent, leaving me holding my cell phone and repeating, “hello?” checking to see if their calls had dropped.

“Not her! She’s fine. She takes care of herself. Look at her – she’s going to be 50 in June, she doesn’t look anything like 50, let alone like someone with a doomsday prognosis.” Sword of Damocles hung on the mint green wall over the hospital bed, my morphine drip morphing everyone’s words, a swirl of doctors, test results, and of two hospitals fighting over whose patient’s money the other stole by keeping me in their bed. I felt like a mixed metaphor in the wrong storybook. Now Goldilocks? Clearly I wasn’t in a fairy tale and Goldilocks would certainly find every hospital bed uncomfortable.

The bleak prognosis of my diagnosis shocked me and everyone involved in my life. Inescapable, unbelievable, incurable…a normal life as I once knew it (whatever normal means who can say) abruptly ended as exhaustion, pain, sadness and finally a wholly reinvented life took over completely. What could anyone say after five days hospitalization, five liters of cancerous fluid removed, five days of struggle to work with insurers, five more to become a patient of an oncology team, and five weeks from the day of my initial hospitalization I began my chemo and hormone treatments. Yet all my doctors could say was…wow.

Everything changed, including my relationships with my family, my friends, my stepsons, and Craig. My husband fell into the depths of an anxiety fueled depression. I’m happy to report three years later, he’s finally recovered, sort of – unless some dramatic bullshit flung from the other side of town where his brainwashing banshee of an ex wife pretends to raise his younger son. Do not judge. I’ve kept this ugly saga away from my writing generally speaking. This discussion requires a blog site all its own, and that would only serve to elevate an already overinflated sense of control for a person with a massive narcissistic disorder. No thanks. Dealing with the emotional wreckage and fallout is quite enough. (In case you’re reading this, and you know who you are, go fuck yourself.)

Craig’s recovery requires a medication called Pristiq. His mental health issues began well before my diagnosis. After the stage four gauntlet got laid down, he struggled with the horrible notion of my death and we began about five months in hell to get back to one another. He initially reacted by ignoring me and admitted feeling resentment, of which he felt ashamed. In hindsight I am uncertain as to how ashamed he really felt. It’s clearer to me how much resentment lingers in the air between us, even now, three years later. It’s as though he tests me. He waits to tell me I never want to do anything and asks me to go out with him when I’m having a bad Health day or when I’m enraptured in writing or editing a piece of poetry or an essay for my blog, or trying to work on my Etsy business. All of these things suffer from the resulting bickering brought on by the care giver role thrust upon him. The role he threw off like a bad suit after a long day almost immediately after learning of the responsibilities.

Lonely, scared, angry, tired, moody, but generally motivated to live, I said, “not me, no way.” And sure as I tell anyone who’s reading this, I’m still here three years after my diagnosis of stage IV A1 lobular hormone receptor positive breast cancer with metastasis to the bones (and now liver). My sexuality and womanhood now stripped away from me, I no longer appeal to my husband or anyone for that matter. I feel like I’m a non-gendered adult. I’ve taken a laundry list of medications, sat in monthly seats in the infusion center for shots to my abdomen and gleuts, monthly blood work, countless visits to oncologists, psychologists, palliative oncology, radiology, specialists, a multitude of nurses, a surgeon. I spent a second week-long in the hospital. I’ve been to breast and metastatic support groups, cancer retreats, and learned to deeply meditate.

There’s good things that I’m certain have humbled me. Yet I speak to none of my former friends but a couple. My new friends don’t expect me to be as I was and know me only as I am now – someone with metastatic cancer. I never see my stepsons who have been convinced by their mother that I’m lying about the severity of my disease because I look too good and I’m simply a gold digger who doesn’t want to work full time anymore. I wish, honey, I wish.

It’s still a nightmare and admittedly and despite the “best of the worst case scenarios,” I’m not thrilled with a life path that leads only to an early demise. Canferatu never sleeps, his fangs deep within my neck. And though you cannot see him, he preys on my organs and functional systems until another cocktail puts him into a coma, but a coma he always awakens from to claw at my insides and take more of my energy for himself.

I still want my life back.

It is what it is, huh?

If “it is what it is,” why is it so the collateral damage of metastatic cancer so fucking hard?

Why is it okay to break promises to me?

Why is it so painful to look at the shattering of once solid love?

Why is it okay for me to take handfuls of pills but it’s not okay for you to take one?

Why did I think it was a good idea to give away all my strength?

Why did it fail me to believe when it came down to it?

Why is it you can’t put your paranoia away for one day and help me live?

Why is it impossible to find my fight today?

Why is it okay for my needs not to matter?

How is it possible for you to listen silently while you hear me cry?

Why was it okay for me to be a day late to get the assist I needed to save my life?

Why is it okay for a copayment for chemotherapy to be greater than an entire months disability check?

Why is it okay to see that my life is slipping away?

It isn’t what my it is.

Why isn’t loyalty, isn’t love, isn’t commitment, isn’t kindness, and isn’t believing in the human spirit – why aren’t these its the “it is what it is?” It is what “it is is always negative.” Why?

Fuck it.

Whatever it is.