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 containers; my vagina an alien spacecraft hovering above a 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 camps 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. I asked her about her plans for the next couple of days since I knew she was off.  “I’m heading over to Buffalo with my sister to hit the holiday sales at Macy’s.” “That sounds like fun!” I said enthusiastically. 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.

So, let’s recap: I couldn’t pee, I couldn’t poop – (waste was now coming out of my stomach into a bag, since my surgery had also included the bonus gift of an ileostomy) and I had a bum leg. For the love of God and all that is Holy, throw me a bone, any bone. This is too much.

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, so I would shuffle over to the bathroom using my walker, trying my best to avoid looking at myself in the mirror so as not to further depress myself. 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, they called it doing an “in and out.”

Though the Marine Corp nurses were amazing, there was one whom I always dreaded having. She acted like it was my fault that I wasn’t peeing and she gave me major attitude over having to do in and outs. Instead of properly sterilizing my urethra, she would literally throw sterilized water from a far distance over my entire vaginal area. Then she would leave the room to go searching for a flashlight. Often she would attempt to put the catheter in, but instead she would jam it up the wrong hole. When she finished she would “tsk tsk” me under her breath. I knew this part of her job was a major drag, but what could I do? The universe was busy helping others and my bladder nerves had gone into hibernation.

At this point my cancer wasn’t even my main concern. All I could think about was the fact that I was a skeleton with thinning hair who couldn’t pee, poop or walk. Were it not for the support of my amazing partner, family & friends, I would surely have fallen into a pit of despair.

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:

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Ways in which cancer is making me weird (or weirder). Part one:

Since the day my oncologist diagnosed me with a rare, incurable cancer, one for which long-term survival is considered five years, I have become obsessed with getting rid of my belongings.

It’s not that I’m into Minimalist Living, the trendy lifestyle of the moment, because I’m a proud Maximalist. Nor am I following the advice of best selling author Marie Kondo, whose book “The Life-Changing Magic of Tidying Up,” advocates purging everything which does not bring us joy. Most of Kondo’s system just doesn’t work for me. I tried following her strict rules, but halfway through folding my socks so that they stood upright like mini soldiers in my drawer, I lost my freaking mind. I started dressing up my, (now deceased dog), Leroy, in my old sweaters:

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I have so many lovely things (most of them not practical – that’s my specialty) and each piece brings me joy. Therefore I should keep them all, right? I’ve never heard anyone say: “I want less joy in my life please.” Note: I am not an actual hoarder. As part of a volunteer job I used to visit an elderly woman who was a true hoarder, so I know what that chaos looks like; I’m just a collector of pretty things.

The kind of de-cluttering and purging that I engage in, is fueled by my deep anxiety that I will die soon and that my partner with be stuck with all of my stuff. He will be devastated (his word) and in addition to processing his own grief and dealing with my family, (they love him deeply and consider him their son-in-law), he will have to go through all of my belongings. Having never had to be in charge of such a depressing task, I can only imagine how difficult it would be. I see my compulsive de-cluttering as preparation for my death and as something that will make my partner’s life a little bit easier down the road.

Of course the deeper truth here is my desperate need to control something, anything.  I can’t control my cancer. I can’t control how my body reacts to cancer treatments. I can’t control the myriad of complications that arise. But I can control how much stuff I leave behind and that makes me feel less powerless.

So I continue my regular mini-purges. I keep most of my vintage items, like Pulp Fiction books with wonderful cover art, my hoop earrings circa 1980’s high school years, my pink rotary telephone…

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But I’ve given well over half my wardrobe to charity. Since I now have to wear an ileostomy bag, most of my fitted clothes no longer work, so I’ve freed them from their closet shackles so they can now bring joy to other women: women who are suffering in unimaginable ways – fleeing abusive partners, struggling to put food on the table for their kids, trying to kick drug addictions…These women deserve every little spark of joy that I can give them.

Gifts were initially harder for me to part with because of the guilt I felt and I must give credit to Marie Kondo for helping me with this issue. She encourages people to let go of unwanted gifts – with love, gratitude and blessings (or something like that) – and allow others the chance to experience joy.

In my case many of my unwanted gifts were jewelry items. My partner is not a jewelry gift giver, so that wasn’t a problem. And I kept some gifts that had sentimental value: an amber stone ring that my youngest brother gave me, my paternal grandmother’s wedding ring, a beaded Goddess necklace that my best friend gave me twenty-five years ago…But all the other jewelry that I had never worn, I cleaned, then bought individual decorative boxes to put them in before dropping them off at a women’s shelter; they would make beautiful birthday and holiday gifts. By helping another woman feel special, I was also – selfishly – helping myself. For each gift that I gave away I felt my spirits lift. It was as if each box contained a magic potion that wafted out and enveloped me, making me feel, (at least temporarily), very happy.

My partner is weary of my de-cluttering compulsion, I think it makes him a bit uncomfortable; it seems a tad ghoulish. He’s also concerned that I might get rid of something that has sentimental value to him, so I’m very careful and mindful of his feelings.

In the end it’s my cancer journey (though I abhor that expression) and if getting rid of stuff that I have no love or use for helps me cope, then I’m going to continue. Who knows, maybe one day I’ll become a Minimalist.

 

 

 

Go Juice Yourself

If one more freaking person tells me that juicing will prevent my terminal cancer from returning, I will strangle them.  Or, at the very least, I will de-friend them on Facebook. Believe me, I know all about juicing – I lived in Los Angeles for twelve years!  And it’s not like I’m sitting around all day eating Doritos and drinking Orange Crush!  I eat a balanced diet, but I also include one daily treat – like a couple of cookies or a bowl of ice cream.  I inherited my sweet tooth from my paternal Grandmother who used to hide chocolate bars all over her house!  If anything, I am more aware than others about the importance of diet because I have an ileostomy.  With ileostomies, and mine is a “high-output” one, food (or juice!) goes right through you.  So I am very aware of getting enough calories and nutrients to keep my immune system strong.  I have managed to get myself back up to 115 pounds – from a low of 90 pounds! – so I clearly know what I’m doing.  I understand that people just want to help and that often they don’t know what to say and I truly appreciate everyone’s concern.  But please, enough with the Juicing.