“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 accumulates 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, or up past 7 p.m. and both are 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 which is an out-patient procedure called a thoracentesis where an ultrasound guides a needed through my back and ribs and into my chest to drain 500 to 1500 milliliters of fluid. 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 2-day recovery time, as my partner said, “to tap me like a college keg” and remove what looks like a gigantic mug of dark beer.
I begged for the procedure but wasn’t expecting the pre-op, post-op, lab drawers, an IV, antibiotics or to feel like a slab of meat on an operating table. 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 standing right 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 don’t want to be” 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) and often it's not safe enough to discuss how this impacts us as adults.
Although I usually joke with medical providers that I'm just a ‘control freak,” I rarely share what made me one.
I’d asked if I could have local sedation for my hysterectomy as well and though my surgeon gave me a hard no, she asked why I was requesting that to see if there was another way for me to get my needs met. With her, I was honest and told her about my history of trauma and sexual abuse. She told me that as a gynecologist oncologist she 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.
She also shared, when I told her all about the ACEs study, that she believes the connection between childhood trauma and adult gyn cancers based on her practice experiences.
2 of the nurses whispered to me that they wouldn’t do sedation 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 request 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 side ribs for the doctor. Hanging over me was an ultrasound machine so the fellow could see where the needle 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. 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 my face but my head but since 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 numb from the several shots of lidocaine and 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 as if the fellow was threading the tubing under my skin the way I have threaded a broken drawstring through the top of my pajama pants. 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. It's hard to be a patient, wearing a johnny, 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 before the procedure to privately ask me questions to prepare me for the recovery. She was friendly, thorough, 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 would be true post-op.
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 are not a problem for me."
She wasn’t being 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 default response, even when I don’t express it, and can suppress it behind politeness. First, what I’m often feeling is irritation.
- When the doctors say I look too healthy to be sick, I get mad because I am.
- When they say I’m too young to have cancer, I get mad because I have cancer.
- When they offer more support than I’m ready for, I feel fearful.
- When they fail to provide information or answer questions, I feel confused.
- When they dismiss my concerns, I feel patronized.
Some of this is a result of my trauma history, my general lack of trust in humans, as well as mistrust of systems of care, from past experiences and being misdiagnosed. Some of it, to be fair, is my personality and I've worked hard on being less reactive but I'm still reactive.
Often, I want to say one of two things to new providers:
- Please consider me a partner and collaborator in my care when it comes to my disease and any procedures. I fear lack of agency more than death.
- Tread lightly when commenting about my personal life, needs, age, or appearance because it's always unnecessary, sometimes insensitive, and occasionally offensive.
This goes double for when I'm partially undressed or drugged in any way.
One nurse asked if there is any chance I could be pregnant and I laughed out loud. “I have ovarian cancer,” I said. “I have had a total hysterectomy plus and don’t have many organs above my thighs. I've been scraped clean like a carved-out pumpkin.”
“It takes a lot to make me blush,” one nurse said, “but that did it,” and then he stopped putting in my IV because he was laughing.
“It would be a miracle of medicine for me to pregnant,” I said to the other nurse, “Unless the hospital accidentally forgot to take out my fallopian tubes, ovaries, cervix, and uterus, etc. Plus,” I added, “I’m menopausal, on chemo, can’t breathe well, and also have a pericardial effusion so I can’t exercise, so sex is not a real high priority right now. So there is no chance I could be pregnant.”
I didn’t say, “Obviously no one read my 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 I know the people I meet are at work, and just doing a job and following safety protocols, and many of them are burnt out because of COVID.
“We’re giving you an IV antibiotic,” the operating nurse said.
“Why?” I asked.
“To prevent an infection,” she said.
“Is that optional? 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?”
I explained that chemo is less effective after antibiotics are given which could impact my 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. 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 preferred protocol and took antibiotics?”
“Look,” the attending said, not hiding how annoyed he was, “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 after his explanation. I didn’t have the energy to keep arguing or the space to pull up Google scholar to research single use IV antibiotics and chemo while half-naked and in a pretzel twist position. I need to mention that not all of my experiences have been bad.
In contrast, when my chest tube was removed the doctor wanted to give me a course of antibiotics and when I said I didn't want them and why he called to check in with my oncologist. When my oncologist called back, he asked to be on speaker phone so he could talk with me directly as well as the doctor doing the procedure. When I told him why I didn't want antibiotics he said we could monitor my wound with photos, revisit it daily as long as I didn't show signs of infection, as my white counts were high enough to make an effort but that if I showed any signs of infection, I'd need antibiotics. I was felt seen, heard, and grateful. He is very understanding and patient and always presents me with options, but also listens without defensiveness when I'm afraid or reluctant to do something and I respect and appreciate this more than I can convey.
These are the reasons I don’t like to be drugged or asleep while in the hospital, especially when we can't bring a trusted love one to advocate for and with us most of the time.
It’s hard to self-advocate in a room of 6 or more people, multiple computer monitors, and oversized machinery displaying my internal organs like my body is a reality tv show only the medical people can watch as I stare 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 the paper covers which had given me some privacy, and took off the heart monitor electrodes, blood pressure cuff, and put me in a wheelchair, and took me to the post-op where I could put my clothes back on.
There, I was given a folder, a short tutorial on self-draining, and a YouTube link on how to use the PleurX drainage kit. Then I had a chest x-ray to make sure the procedure went smoothly and was set to go home.
However, an hour later, when I was five minutes from home, and still in traffic, the fellow surgeon called and asked me to come back to the hospital.
“You have air in your lung,” he said.
“Isn’t that a good thing?” I asked because air feels much better than water on the lung.
“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 can only tell you I’m calling you now and I just saw it.”
“What? I pressed. "What’s the mechanism or procedure that is supposed to keep this from happening to me or anyone else in the future?"
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? Can I wait til tomorrow?"
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 and when I'm going to the doctors visits often several times a week.
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 use it to remove air.”
“Can I use my PleurX today or tomorrow to remove air?” I asked.
“It can’t hurt and it might help," she said.
So that is what I did after sleeping and watching several You Tube videos 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 Pleurx, 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 Pleurx bottles ran out no one was able to help me find or order replacements for more than a week.
The hospital told me to call the visiting nurses, the visiting nurses told me to call my insurance, my 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 (which are insurance covered) 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 the surgery.
I share this not to complain endlessly but because even in the state of MA, at one of the best hospitals in the world, near where I live and work, as an advocate and former 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, communicate or review the context of a patient’s life or condition. So, the day after my chemo infusion, when I'd woke at 4 a.m. from the steroid high, I made 3 phone calls to my healthcare provider, texts and calls to my oncologist, 3 calls to the department that did my PleurX surgery, and 6 calls to medical supply companies, and that’s not including the emails or back and forth and rescheduled appointments with the visiting nurses because without the bottles they can't help me drain the fluid or dress and clean the wound.
My friend Beth, a retired social worker, 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 or responds to in actionable ways and it's part of why we don't have health equity or equal treatment to access and care. The truth is it is worse for many people and many people suffer as a result.
Medical procedures are tiring and frustrating to anyone but when you have been told you have two to three years to live, and are fighting to use the time wisely, repeatedly spending hours and hours and hours on the phone, fighting to get access to routine follow-up treatment shouldn’t be one of the biggest and most consistent time sucks and often 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 for better care while sick and presumably being cared for?
Even if our cancer can’t be cured or well-treated, I wish there were more care and compassion for those of us in treatment so we can better cherish our lives and whatever time we do have.
Notes: 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 also got the PleurX removed AND seem to have avoided infection after it was removed. While the process was super painful and the healing quite slow, 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 than normal. Whatever it is, the healing has finally happened. I don’t need to avoid baths or swimming. I don’t need to apply ointment or bandages. And because my oncologist was willing to wait on antibiotics, I was able to get away without using them this time.
Also, the visiting nurses eventually saved the day and helped me get my PleurX bottles mailed to my house.
Today, I return to chemo (round 3) and hope my CA125 (tumor marker) is coming down. That will keep the fluid at bay and buy me more time. Fingers, toes, and everything else crossed!!
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