Chemo Soup

“You’ll feel like you were hit by a truck after the operation.”

“Jesus.”

“The surgery will take 9-12 hours, including administering hot chemo into your abdomen.”

“Do you think you’ll be able to save my reproductive system?”

“We’ll try, but it’s likely that it will all have to come out.”

“Oh no.”

“We will be giving you an ileostomy and it could end up being permanent. Be prepared for that.”

“Oh my God.”

“I know it’s a lot to digest. If you have any other questions please let me know. I’ll see you on the 18th.”

“Thank you Dr. Govindajan.”

I left the hospital in a daze, walking aimlessly for several blocks. A pub down the street caught my eye and I went in and grabbed a booth at the back. It was only 11:00 AM but I ordered a glass of wine. I also ordered a grilled cheese so I didn’t look like a sad alcoholic. I opened my notebook where I’d had written down everything my oncologist had just told me.

“Here’s your wine sweetie, tough morning?”

“Ya. I have cancer and I’m getting operated on in two weeks.”

“Oh I’m so sorry. My sister had cancer and she’s fine now. You’ll be okay too, don’t worry.”

“Thank you, that’s nice of you to say.”

Actually I’m probably not going to be okay because my cancer is very rare and there’s no cure and there’s not much research on it.

I started making a list of things I would need for the hospital: facial wipes, lip balm, reading glasses, secret stash of Xanax, cotton pillow case because the ones in hospitals are gross polyester, mirror, phone charger…

The grilled cheese arrived and looked delicious. I took a bite and then another. On my third bite I got that familiar feeling again, the one that had been plaguing me since I was first diagnosed with Malignant Peritoneal Mesothelioma.

My throat is closing. I can’t breathe. I’m dying. Please someone help me.

I pushed the grilled cheese aside and grabbed my pills. As I tried to swallow one it felt like there was no room for it to go down.

Oh My God the cheese has coated my throat and now I’m choking.

Thankfully the Xanax kicked in quickly and I felt like I could breathe again, but I couldn’t eat another bite. I had already lost ten pounds and I wanted to gain weight before going into the hospital, but food had become my enemy.

After the pub I headed to a nearby department store. In the shoe department I chatted with a friendly salesperson about our favorite fall fashion trends. I bought three pairs: tall wedge booties and fringed mid-calf cowboy-ish boots, plus a cool pair of men’s style oxfords.

Where are you wearing these? You’ll be dead soon.

In the cab home I leaned back and shut my eyes. Wait, so I’m going to go through menopause all at once? Like – BAM! – I’m a crone now? Is that how it works? Why? Why is this happening?

Do I even want this operation? Like, what’s the point? With this disease I’m basically fucked, so why go through all of this? And why the hell can’t they save my female bits? Is it bececause I’m 46 and they figure I don’t need them anymore? I do need them and I want them God Damn it.

And, side note, why can’t I have a normal cancer like breast cancer? I mean Mesothelioma? Caused by exposure to asbestos as a child? What the actual fuck?

Having only been dating my boyfriend for one year I felt my diagnosis and everything it involved was just too much pressure on us. We should break up now before we became more attached. He didn’t sign up for menopause and an ileostomy bag and God knows what other complications, plus a high probability of me dying soon.

I wondered about the whole dying with dignity thing. Oregon had recently made it legal for individuals to choose to end their lives when they were sick and suffering and since I was an American Citizen I reasoned I could move there. But what if you wanted to end your life before you got to the sick and suffering part. Like kind of preemptively end your life? That should be allowed too.

I could go the straight suicide route. I had just filled my prescription for Xanax and it was surely enough to kill me. The problem is I would have to do it immediately before I had another panic attack. The more panic attacks I had the more Xanax I used up, which would not leave me with enough pills to end my life.

Back at home I continued thinking through my Xanax plan. One of the many issues with it was that knowing me I would have a panic attack while trying to swallow all the pills.

A panic attack while trying to kill myself. Ridiculous.

The other complication with my plan was that it would devastate my family, boyfriend and close friends. I didn’t want to hurt them, but I also didn’t want to be forced to live through this nightmare. Suddenly I felt resentful of them. Now, because of them, I was going to have to endure a horrendous surgery with some weird hot chemo poured into my stomach, making my abdomen a poisonous soup. Then I would wake up sweating from hot flashes with a stoma spewing waste into a bag attached to my tummy.

Not fucking fair!

Within minutes the rage I felt turned to sadness, but I couldn’t cry. I couldn’t scream or cry or do anything to get the emotions out. They were all trapped in my chest. I lay in bed for an hour not moving, my 100 pound dog Leroy lay with me, his giant head on my stomach.

I could not leave Leroy that’s for sure. I had dragged him with me all the way from Los Angeles to Toronto and he considered himself my husband. Though he tolerated my boyfriend, he would have preferred to have me all back to himself. During my marriage Leroy had saved me. Though I had rescued him, he had emotionally rescued me and I was forever grateful.

It was time for Leroy’s mid-day walk. I put on his fall sweater – blue hand knit with a giant red crab design – and we went out in the sunny, cool air. We ambled along and he scored half a croissant out of a bush. Having previously lived on the streets of LA, he was adept at sourcing food.

“Do you know how much I love you?” I asked him. I kissed his beautiful brindled head as he licked the last of the buttery croisssant off his lips.

Three women were walking towards us on the opposite sidewalk. They were dressed in black abayas, but the woman in the middle was wearing the most beautiful sparkly one – it looked like silver metallic sparkly stars. I waved to them and they waved back, the one wearing the sparkles flashing me the peace sign.

In that moment I realized that I would go through with the wretched operation and scary tummy chemo soup.

I didn’t want to, but I would.
I hated my lack of options, but I would.
I was mad as hell at God and the Universe, but I would.
I didn’t know if my relationship could survive it, but I would.
I had no idea how life could possibly go on after this all, but I would.

I would because there was a woman wearing a sparkly metallic abaya flashing me the peace sign and for some reason I took that as a sign. I would.

✌️

Fringed Purse (mini-fiction based on a real-life story)

“Where’s my fringed purse?  Don’t let anyone take my fringed purse.”

“I’ve got it, don’t worry.  I’m literally holding it.”

“Ok but be careful b/c if it’s not snapped shut then all my stuff will fall out.”

“It’s snapped shut and it’s secure.”

“Alright, but keep it with you.  You have no idea how many compliments I get on that purse, it’s a highly desirable accessory.  It’s from a British-Moroccan company, I forget the name.”

“Relax, everything is fine.”

“This place smells disgusting.  Like urine, vomit and desperation.  I’m so humiliated.”

“Don’t worry, no one is judging you.”

“Someone *literally* just stared at me like I was a sad low-life who had hit rock bottom.  Though at least my purse makes me look less pathetic.  I mean that’s the power of a good accessory, a great purse or a pair of stunning shoes can literally change your life.  I…”

“Sir if you could just move to the right, we’ll get her on the stretcher.  Are you riding with us?”

“Yes I am.”

“And he’s bringing my fringed purse with him.  Don’t let him forget it.  I’m feeling better anyways, maybe I don’t need the stretcher.  Plus, I kind of like it down here.  It smells gross but the cold tiles feel soothing.  Maybe I can just lie here a little longer?”

“Ma’am, we’re bringing you and your purse to the hospital on this stretcher.  Why don’t you just try and relax.”

“Okay, I’ll try, though relaxing is not my specialty.  I’m more of a go, go go person, you know?”

“Could you please stop talking and let them do their job?”

“Alright, Jesus.  I’m the one picking up god knows what diseases from the subway platform, you’d think you’d be nicer to me.”

“If you don’t stop talking I will leave your fringed purse here.’

“That’s cruel.”

“Mr. Paramedic Tom, you said your name was Tom right?  This is my first ambulance ride, it’s a little exciting, you know?  Like with the lights on and everything, swooshing through the streets…”

“Well, if you’re lucky, this will be your last ambulance ride.”

“Good point.  You are very nice.  Thank you for being very nice, I appreciate it.  I’m just going to close my eyes for a few minutes.’

“Good idea.” Tom said.

“Ma’am?  We’ve arrived at the hospital.”

“Thank you so much.”

“Paul, do you still have my fringed purse?”

“It’s right here, don’t worry.”

“Oh thank God.  I see a man over there, barfing and that other guy looks like he’s shooting up.  People do drugs right outside the hospital?  Oh God, those poor souls.  Tom, I think you and your partner need to help them, I’m fine.  They need you more than I do, I can walk into the hospital with Paul.”

“Ma’am, just let us finish our job, okay?  We can’t take you off the stretcher, we’re not allowed.”

“Oh, sorry.  Sorry to be a pain.”

“It’s okay, don’t worry about it.”

“Paul, can I have my purse?  I just want to hold it.”

“Here, I’ll rest it next to you on the stretcher.”

“I feel like I’m passing out, even though I’m already lying down.  Why did I collapse like that?  I have a bad feeling about this.”

“Everything is going to be okay, it’s all going to be okay.”

Sparkle Brain

I never, ever remember that I had a brain aneurysm coiled a few yrs ago, but I just found this…

I can now officially say that I have a sparkly brain!  On Wednesday I had my brain aneurysm “coiled” with platinum – so swanky!  The surgery went smoothly, for which I’m very grateful.  But My God Almighty, I have never experienced headaches like that.  I spent the night riding waves of intense nausea mixed with the most brutal pain.

As with all my medical experiences, it had an absurd, comical side to it: the patient next to me had a visitor, (dressed head-to-toe in bedazzled splendour), who was blasting Celine Dion while performing a weird interpretive dance (in an ICU-type recovery room). And no, I’m not exaggerating.

The doctors wrote me a prescription for Percocet to help with the headaches and I was paranoid that I would become addicted. That I would end up like Nurse Jackie, doing anything to secure my next high.  Once home though the drugs were a godsend and I spent most of the day dreaming of Iron Maiden – who were dressed like Wizards – flying through the sky!

(Author’s Note: A special thanks goes out to my cancer!  Had I not been in the hospital being treated for Mesothelioma – where I ended up with “Neuroleptic Malignant Syndrome” after a bad reaction to a drug – I never would have had my brain scanned and my aneurysm would have gone untreated.  So thank you Mesothelioma!)

Finding Urethra

“Let’s have you pee in a bed pan today!” My nurse exclaimed with an air of excitement, like we were about to go see our favorite band.

I had been in the hospital for almost four weeks, (to treat Peritoneal Mesothelioma, a rare cancer), peeing through a catheter the entire time. I was game to try going on my own, but I was weak and wasn’t sure I would have the strength to pull myself up on the bed. My nurse took out my catheter then helped me into an awkward position, crouched above a cardboard pan.

The pan looked like a larger version of those biodegradable herb pots, with my vulva like an alien spacecraft hovering above the brown pebbled earth.

“I’ll give you some privacy,” said my nurse, leaving the room.

I looked out the window at the falling snow. No urine was exiting my body. “I command you to pee!” I said in a theatrical voice to an empty room. Nada. Not a drop. I was sweating and wanted to lie down, the position required too much strength to hold.

The succulent-crystal gurus say, “Ask The Universe – with love and gratitude – for what you need. Then visualize having what you need – and poof! – you will manifest it.” So I asked the universe to help me pee, in what I hoped was a loving and grateful manner. Then I visualized a long river-like flow of urine exiting my body – swoosh! I paused, ears tilted, in full manifestation mode. Nothing. Maybe the universe was busy helping people with more serious problems, like those living in war torn countries. I couldn’t blame the universe, I’d do the same thing if I had magical powers & everyone was hounding me for help.

I was sure I was due for another blast of Hydromorphone. After two surgeries and HIPEC, (hot chemo poured in the abdomen and swished around), I was ablaze with pain. I buzzed the nurse’s station:

“Hi. I can’t pee. Nothing is coming out. Also, I think I’m due for more painkillers.” My nurse responded, “be patient, keep trying, it’ll come. And no, you’re not due for more pain meds yet.”

I stared gloomily at my crotch. “I know you’re in there, come out come out wherever you are!” Still nothing. I tried reaching for my water cup and fell into the pan.

My nurse appeared, “don’t worry sweetie, your bladder is just waking up from a long sleep, we’ll try again tomorrow.”

She helped me lie down and inserted a new catheter and we chatted about her weekend plans. I loved my nurse, I loved all of my nurses – they were like athletic shoe-wearing angels tending to me with care and quiet confidence.

“I’ll see about your pain meds” she said, as she handed me a damp towel for my sweating brow.

After five weeks in the hospital – and no peeing on my own – I was transferred to a Rehab Hospital to work on regaining strength, gaining weight and learning to walk again. My left femoral nerve had conked out during surgery, (from being splayed out for so long on the operating table) and I had awoken to find that I couldn’t move my leg.

The nurses at the rehab hospital were hardcore, they were like the Marine Corp of Nurses. They immediately took out my catheter and started “bladder training.” They seemed confident that I would be peeing in no time.

I was instructed to try peeing on my own every two hours. I would slowly make my way over to the bathroom using my walker, trying my best to avoid looking at my emaciated body in the mirror. Sitting on the toilet with the sink water running, I would wait five minutes, then get up and do my haunted girl shuffle back to bed.

Bladder training required waiting six hours before being allowed to have a catheter inserted to void the urine. In between physiotherapy, sleeping and doing my laps around the floor, my bladder would fill up to the brim; it was horrible. At this point I was no longer on pain meds, but I would often sneak a Xanax from my private stash just so that I didn’t completely lose it.

The nurses were required to scan my bladder to see how much urine I was retaining before they were allowed to insert a catheter to drain me. A catheter, in this case a long rubbery one which looked like a hose, was lubed up then inserted into my urethra. The urine would then drain out into the brown organic pan – it was called doing an “in and out.”

Then came the day when one of my favorite nurses dropped a bomb: “you’ll be going home very soon and your bladder nerves are still not working. So today I’m going to start teaching you how to do your own in and outs.” Dear God, have mercy on me please.

Thus began a brief chapter in my life called “Finding Urethra.” Because if you want to drain your urine, you first need to find the hole that it comes out of. And by hole, I mean a really tiny, almost imperceptible slit that is kind of hidden by the rest of the female bits. Maybe I’m in the minority or I missed a crucial health class back in high school, but I honestly didn’t really understand where the urethra was. So I used a mirror to watch the nurse and at night, under my blankets, I examined myself by the light of my cellphone.

I had an irrational fear of doing the procedure on my own. It’s like all my anxiety about having cancer was projected onto this one procedure and I couldn’t imagine that I would ever master the skill. I envisioned myself at home, swollen like a balloon with unreleased urine, until one day I just exploded, spraying pee everywhere.

But like anything in life, when your back is against the wall and you have no other options, you figure things out. One day, having finally located my elusive urethra, I successfully performed my own in and out! I basked in the glory of the moment, telling everyone on my floor my good news. I celebrated by eating an extra cup of ice cream (side note: the little hospital ice cream cups are, unlike all other hospital food, strangely delicious).

A few days later I was discharged from the hospital with a supply of tiny, clear catheters, lube, a giant splint on my leg, a walker, crutches and a cane. It would be six more months until my bladder woke up. Then, one day, while sitting on the toilet, I suddenly heard a beautiful noise – the swoosh of urine! The universe had finally granted me my wish.

Author’s Note:
My bladder nerves only partially woke up; I still have to self-catheterize twice a day. This is what the little catheters, aka, pee sticks, look like: