Drained

“Hardship is not the problem,” Anne Lamott wrote in Dusk Night Dawn, “it’s the  weirdness of it all that wears me down.”

I can agree with that when it comes to life and especially to life with cancer. But I keep wondering what is hardship anyway? What’s hard? What’s easy? It’s so subjective and varies by person and circumstance.

What I do know is I was uncomfortable and unprepared for my PleurX surgery procedure even though it was done at my request.

A PleurX is a type of chest tube that can be used at home, allowing me to drain the malignant fluid that keeps accumulating in my right lung due to #ovariancancer. As the advertisement on the PleurX box boasts, “The difference of living rooms not waiting rooms,” and that pretty much is the whole point of this procedure.

When the fluid collects, it puts me at risk of infection, causes shortness of breath, and jacks my heart rate up to somewhere between 140 to 180. When my heart rate is high, it’s hard to do most anything. I sleep more than half the time and am unable to keep up with my daily walks, which is bad for my physical health, mental health, and for the quality time with my partner, daughter, and our pooch.

I’ve had a pleural effusion for months, and it’s been “tapped” by the interventional radiology team three separate times. But since the fluid keeps coming back, I want the freedom and agency to drain myself so I can get immediate breath-easier relief without requiring 6 phone calls, 4 emails, 2 car rides, and an hour-long procedure and two-day recovery time, as my partner said, “to tap me like a college keg” and drain what looked to be about two bottles of wine each time.

I begged for the procedure and I don’t know why I wasn’t expecting pre-op, post-op, lab drawers, an IV, antibiotics or to feel like a slab of meat on the operating table, but I wasn’t. Nor was I prepared for how painful it would be to have a tube inserted below my skin and above my rib cages, poking into my pleura and stitched into my skin to hold it steady.

It’s mostly my fault because I was not prepared on purpose. The longer I live with cancer, the less willing I am to give procedures more of my time or energy in advance.

Unlike in the past, I didn’t read 20 articles in advance, didn’t ask 10 others survivors if they had the same procedure, or how to prepare and recover, and I didn’t even drill the doctor with tons and tons of questions.

The doctor doing the surgery was a fellow, a fancy word for new at his job, and he appeared while I was sitting to give me an overview of the procedure with an attending next to him supervising.

I kept saying, to anyone and everyone, “no sedation – only – local,” because I was afraid someone would accidentally knock me out. The doctor asked why I didn’t want sedation and I wanted to say, “Because I just don’t want it” in a “my body and my choice” tone of voice. But I didn’t.

“I don’t like to be out of it. I like to have my wits about me,” I said. I left out the other part, how I was molested while I was sleeping and I don’t like to be naked, helpless, and unconscious around others – especially strangers.

How often do we protect medical providers from uncomfortable topics because we know that our answers aren’t on the list of what they’re expecting when they ask a question? I kept my past to myself even though I know I’m not the only one who feels extra protective of my unconscious body. Unfortunately, many patients have a history of childhood sexual abuse and/or trauma happening in adulthood (or both).

I’d asked if I could have local sedation for my hysterectomy as well and though my surgeon said no she asked why I was requesting that to see if there was another way to help me. With her, I was honest and told her about my history of trauma and sexual abuse. She was honest as well telling me that a gynecologist oncologist sees her fair share of survivors. She said we survivors generally fall into two distinct groups:

Those who want to be knocked out and drugged as hard and long as is possible and those who want few to no drugs and to be as aware and awake as possible.

Although I usually just joke with medical people that I’m a ‘control freak,” I don’t usually share what made me one.

2 of the nurses whispered to me that they wouldn’t do sedation either for a PleurX surgery either but made sure to ask me not to share that with the doctors and to be clear the no sedation came from me, not them. I wondered if this is because the doctors prefer patients passed out, compliant, and unable to move or ask too many questions?

The operating room was high-tech. There were at least six oversized computer monitors as well as several ultrasound machines. I was placed on a thin and metal table where I was strapped in so I wouldn’t fall off. Foam wedges were put under my hip and my back so I’d be propped up in a semi twist position to make for easy access to my ribs for the doctor. Hanging over me was an ultrasound machine so the fellow could see where the needle was and where it needed to go, where the four inches of tubing went, above my rib bones and below my skin.

The procedure took about an hour and I had to wear the pulse oxygen meter on my finger and a blood pressure cuff during the entire procedure, and the nurse appeared four or five times to ask me how I was doing and to answer questions since I couldn’t see what was happening.

The doctors were only inches away from me but since my face but my head was turned towards the wall and away from them, I could only hear them. Why they didn’t do the procedure on the other side of me so I could see them the whole time is beyond me. It would have made the surgery much less frightening. I asked them to tell me what they were doing but that didn’t happen much.

I was so numb from the several shots of lidocaine that I didn’t have any pain or even know when the first cut was made. The only thing I felt was the pressure of fingers and tubes moving inside of me. It felt the fellow was threading the tubing under my skin the way I have done when the tie in your pj’s comes loose and you have to slowly and painstakingly put it through a dark and tiny space to keep my jammy pants from falling down. To say it’s a strange sensation is an understatement.

It’s hard to be in the hospital without loved ones to help pass the time. I hate being a patient, wearing a johnny, and carrying all of my belongings in a plastic bag. I hate being shuffled around from room to room to room.

A nurse case manager got me from the waiting room and took me to a chair in the back to ask me questions and prepare me for the recovery. She was friendly and kind.

“We want to send out a visiting nurse,” she said, to help with wound management and to learn how to use the drain.

“O.k.,” I said, but it didn’t feel o.k. “I don’t need that,” I wanted to say, except I wasn’t sure that was true.

She peppered me with questions and took notes.

• “How many stairs do you have to walk to get into your house?”
• “Are there handles in the shower?”
• “Can people in your home help you with your basic needs?”
• “Do you have a ride home today?”
• “Do you have crutches or a wheelchair?”

I started to get angry and defensive. I wanted to scream SLOW DOWN. I said, “I have help but I don’t need it that much. I have stairs and I can manage them just fine. Bathing and showering isn’t an issue for me.”

She wasn’t being judgy, rude, or invasive. She wanted to make sure I had enough assistance and support.

She was there to help me. But I didn’t want to be a person who needed help.

I wasn’t mad at her though I was furious at cancer, angry at being disabled, and exhausted from procedures that are all palliative because managing my disease, rather than eradicating or curing it, is the best modern medicine has to offer me.

I realized that angry is always my first response, even when I don’t express it, and can suppress it behind politeness or cheer, what I’m often feeling is irritation.

• When the doctors say I look too healthy to be sick, I get mad.
• When they say I’m too young to have cancer, I get mad.
• When they offer more support than I’m ready for, I get mad.
• When they fail to provide information or answer questions, I get mad.
• When they ask too many questions or dismiss my concerns, I get mad.
  
  

Mostly, I want to say one of two things:

1. Consider me a partner and collaborator in my care when it comes to my disease and any procedures – and please do not patronize me by treating me like another anonymous patient.
2. Tread lightly when commenting about my personal life, needs, or appearance because often it’s offensive, insensitive, or just unnecessary if we don’t already know each other and have a rapport.

One nurse asked if there is any chance I could be pregnant and I laughed out loud. “I have ovarian cancer,” I said. “I don’t have many organs left below my rib bones to my thighs. Inside my abdomen has been scraped clean like a carved-out pumpkin.”

“It takes a lot to make me blush,” the nurse said, “but that did it,” and then he stopped putting in my IV because he was laughing so hard.

“It would be some miracle for me to pregnant,” I said, “Unless the hospital accidentally forgot to take out my fallopian tubes, ovaries, cervix, and uterus, omentum, lymph nodes, etc. Plus,” I added, “I’m menopausal, on chemo, and am here for a pleural effusion because I can’t breathe well, and also have a pericardial effusion so I can’t exercise, so sex isn’t a real high priority right now either. So no,” I said, “There’s no chance I could be pregnant.”

I didn’t say, “Obviously no one read my frickin file, huh?”

But I get it, I’m one in a long line of patients the nurses see every day so I try to act agreeable even when I’m irked because the people I meet are at work and just doing a job.

“We’re giving you an IV antibiotic,” the operating nurse said.

“Why?” I asked.

“To prevent an infection,” she said.

“Is that optional?” I asked. “Can I get antibiotics only if I get an infection?” I asked.

“I’ll ask the doctor,” she said, “But can you tell me why?” she asked.

I explained that chemo is less effective after antibiotics are given and it impacts overall survival.

The attending came over to talk to the back of my head and said, “You need antibiotics. You’ll be in real trouble if you get an infection.”

“I’ve got advanced ovarian cancer,” I said, “so I’m way past real trouble already. This procedure is to reduce pain but chemo is to fight cancer. Cancer is my big problem. This is, in comparison, a small one.”

“We give antibiotics for this procedure,” he said.

“Are you saying I have to get off this table and not have this procedure if I refuse antibiotics or are you saying you would like it if I followed your protocol and took antibiotics?”

“Look,” the attending said, not hiding he was annoyed, “You are not on a 10-day dose of antibiotics. You are getting one dose. The antibiotics will clear your system before chemo.”

I relented because I didn’t have the energy to keep arguing and didn’t feel like pulling up Google scholar to research IV antibiotics and chemo while half-naked and in a pretzel twist position.

This is why I don’t like to be asleep, I thought to myself. If I was asleep, they just do what they want and there’s no time or place for questions or answers or checking or amending. This is why I like people to be with me.

It’s hard to self-advocate in a room of six or more people, multiple computer monitors, and oversized machinery displaying my internal organs, bones, muscles, and fluids like a reality tv show they watch live while staring at the walls and ceilings, squeezing the edge of the bed, counting 1 Mississippi, 2 Mississippi, and waiting for it to end.

When it was over, the nurses un-taped me, took off the heart monitor electrodes, and blood pressure cuff, and put me in a wheelchair, and sent me to the post-op area where I could put my shirt back on.

There, I was given a short tutorial and a YouTube link on how to use the PleurX drainage kit while I waited for a chest x-ray to make sure the procedure went smoothly and I was good to go home.

However, once I was five minutes from home, in the car, managing an hour of traffic thanks to my partner, the surgeon called me to ask me to come back to the hospital.

“You have air in your lung,” he said.

“Isn’t that a good thing?” I asked.

“We got air in your lung from the procedure,” he said, that thing he had warned me about but said never happens had indeed happened.

“Didn’t anyone look at my x-ray before I left?” I asked, confused.

“I can only tell you I’m calling you now and I just saw it.”

“That’s not a good answer,” I said, “What’s the mechanism or a procedure in place so that this doesn’t happen to me in the future or to anyone else?”

Crickets.

“Are you going to come back to the hospital now?” he asked.

“I’m not sure,” I said. “What are the signs of if there’s a problem. What are the chances, statistically speaking, that this will cause a problem?”

I told him my partner already took time off to pick me up, and getting in and out of Boston is time-consuming, especially when our loved ones can’t wait in the hospital with us due to COVID.

He agreed to check up on me twice, later in the day, told me to go to the ER if there was any pain or shortness of breath, and then he said, “If you go to the ER, tell them you have a PleurX because they can remove air that way.”

I asked, “Can I use my PleurX today or tomorrow to remove air?”

He said, “It can’t hurt and it might help.”

So that is what I did because the longer I am sick with cancer, the less willing I am to spend time in any hospital unless necessary and the reason for getting a Pleurex, in the first place, was to be able to manage my health and systems more on my own and at home.

While this was the goal, the reality is that after my “starter kit” of four Pleurex bottles ran out no one was able to help me find or order replacements. The hospital told me to call the visiting nurses, the visiting nurses told me to call insurance, insurance sent me a list of medical distributors, the medical distributors didn’t carry the item, except for two of them, and those two didn’t take my insurance. The out of pocket cost for the bottles was $1,000 and I just went on full-time disability so I can’t pay for that, so, if I can’t get the bottles, I will either need to reverse the surgery and return to taps at the hospital OR I will go to the hospital to get drained because no one has the equipment so I can drain myself from home – information that would have been more helpful to know before surgery.

I share this not to complain endlessly but because even in the state of MA, where this professional advocate lives and works, has access to healthcare, and has been a relentless reporter, I’ve still been delayed, frustrated, and had my life made more complicated not only because of cancer, and cancer treatment but because of the way departments do not communicate with one another, because the context of a patient’s life is not considered and so the day after my chemo I made 3 phone calls to my healthcare provider, three phone calls to my oncologist, three phone calls to the department that did my PleurX surgery, six phone calls to medical supply companies, and that’s not including the emails or back and forth and rescheduled appointments with the nurses because without the bottles I can’t drain myself.

My friend Beth asked what do people do who are sicker, more disabled, tired, worn out, who also have to work, who don’t have insurance or who speak another language or who don’t have the energy to advocate for and fight for themselves? This is a question that no one really answers which is why we don't have health equity or equal treatment or access to care.

If I’m getting among the best treatment that exists in the world, and this is my experience, and I know how to advocate for myself, just imagine what other people go through.

Medical procedures are of course, tiring and frustrating to anyone but when you have been told you have two to three years max to live, and you are fighting to make the most of that time and to use that time wisely, spending hours and hours and hours on the phone, fighting to get access to treatment shouldn’t be one of the biggest and most consistent time sucks but for too many of us it is.

I wondered if I was particularly unlucky but as I read more blogs by writers with metastatic cancer, I’m learning that this is the norm (see Abigail’s post on Dignity andNadia’s Tweets on requesting her care, advocating for her rights, and visits while in the hospital).

We learn to advocate for ourselves and get better at it. But should we have to work this hard while we are being cared for because we are sick to insist that we be cared for better?

Even if our cancer can’t be cured or even well-treated, I wish there were more care and compassion for those of us with cancer so that we can better cherish the time and life we have.

Note: After two rounds of low-dose Carbo/Doxil chemotherapy the fluid around my heart is gone and the fluid in my right lung significantly reduced. I can breathe easier. I can now do exercise and cardio. I now get why chemo is palliative. At first, it seemed that the chemo caused a bunch of negative side effects and health problems and solved none (because the cancer came back). It was easy to feel like chemo caused more problems than cancer. But now, chemo sometimes helps address problems caused by cancer, so now my goal is to find the lowest effective dose and hope I keep responding.

I seem to have avoided infection after the chest tube was removed. But wow, that process was super painful and the healing from it was lengthier and harder than expected. It may be because I’m on a type of chemo (Doxil) that impacts the skin and wound healing so that, along with having lower red and white counts. Whatever it is, the healing has finally happened (and is much better than it looks above). I don’t need to avoid baths or swimming. I don’t need to apply ointment or bandages. YES! YES! YES!

Today, I return to chemo (round 3) and hope my CA125 (tumor marker) is coming down. Fingers, toes, and everything else crossed!!