The other night, as I wrestled with the demons of insomnia, I happened to wander into the jungles of the medical internet. I was looking for answers, and I kept stumbling over questions. I was looking for clarity, and I kept finding myself deeper and deeper in fog.
My latest struggle was a case of hives, aka urticaria. Cause unknown.
So I started wondering.
And I found that even the saline implants that were stuck in my chest after my breast reconstruction were unsafe.
Somehow, in signing various release forms at the time of my breast surgeries, I didn’t register the fact that there are serious concerns about saline implants. Until now, eight years later. I have three graduate degrees, and I am a native English speaker. I come from a medical family, and am immersed in medical frameworks.
According to Mentor whose products are in my body, up to 27% of saline implants were removed inside 3 years, “mostly due to infections, pain, or leaking.” A physician at New York’s Hospital for Special Surgery described Mentor’s failure rates as “alarmingly high” adding: “it’s amazing to me it seems to be tolerated as just something you have to live with.”
“It’s amazing to me it seems to be tolerated as just something you have to live with.” That should be a tagline for cancer and cancer treatments.
I got to wondering when it was that I’d been properly made aware of all the risks. My husband describes me as an “elephant” – not because of my size, but because of my memory. I cannot recall any moment thinking: “Well, these implants are an option, and they’re a pretty risky one, so maybe I should consider not getting them.” Last time I contacted the Oklahoma hospital for my 2009-2010 medical records, it seemed like they had disappeared or were incredibly hard to locate. As for the Stillwater, OK cancer center, where I got pumped with chemotherapy, it closed down soon after my treatments. So where are those records?
Before my surgery, a woman from the local breast cancer support group visited me. I really didn’t want to talk to anyone. I was angry with anyone who thought they had anything in common with me just because we had this disease. That woman had opted to forego reconstructive work. I felt judgy about that choice. I found the breastless body unpleasant.
Fast forward to the present day. I’m contemplating the breastless body for myself.
“Many women will tell you that their doctors told them their implants were perfectly safe and nobody told them about the failure rate or that implants could break,” said Diana Zuckerman (Executive Director of the Washington-based National Center for Policy Research for Women and Families). “Everybody knows that there is a huge gap between what a written document says and what the doctor tells a patient,” says Zuckerman. “If the doctor says, ‘Don’t worry, my patients are all very happy,’ few women will get up and leave.” (WebMD)
So the other day, I brought up the issue of implants-related health impact with my doctor. She was in no mood to entertain my questions. The first time I’d met her was before my cancer diagnosis, and I’d felt like we clicked. I’d felt like we liked each other. Now, she’s seen me depressed and overwhelmed. I feel like now she avoids eye contact, and rushes me through the appointment before she might possibly lose her temper with me.
As it is, most of my doctors have no time to do anything but deal with a single-dimensional singular issue, and then hurry off to the next patient. Cancer, cancer treatments, and the effects of cancer are not single-dimensional. I can tell that she simply doesn’t have the patience for any such issues.
I still stick with allopathic medicine. Like the deluded proletariat, perpetually in a state of want, I trust my overlords. I will not turn to radical notions of holistic medicine, to quacks, bringers of strange messages, – Look! All you have to do is eat a pomegranate everyday; cancer and cognitive issues will all dissipate! The doctors, they assure me, are lying through their teeth. All the double-blinded peer-reviewed medical studies are falsehoods. I only need to pay $60 a vial for Dr. Sham’s Essence of Health, and then patiently wait, while changing my lifestyle, diet, and emotional life – and all will be well. When I search the internet for answers I actually avoid websites that use terms like holistic and herbal and natural.
My doctor has no time to be a Sherlock Holmes and figure out my complicated medical history. There was one who tried; she really did. And she found nothing. Except a year later, there was cancer. I wonder if I can switch from a big Chicago research hospital that specializes in cancer to a small practice where a physician might have the time to deal with my many problems. But then, I recall the smaller clinic whence we have to this date been unable to retrieve even my daughter’s vaccinations records, let alone my cancer records. A hospital allows me to go from specialist to specialist, and records are in one place, at least.
In the middle of the night, it seemed simple. As I lay there, struggling to sleep, struggling to power think against the allergic reaction, I thought, of course, if there’s any possibility that the implants are guilty of even some of these effects, why wouldn’t I get rid of them. In the light of day, it’s not so simple. “What if I got rid of my implants?” I asked my daughter. She cringed, and said, no! It would mean I was, perhaps a different person. “There have been so many changes,” she says. How would regular people respond to me? Even in my chaste daily life, in my professional exchanges, I find male colleagues are not as nice to me as they used to be, when I was a real, feminine body. Not that there’s anything sexual in our social exchange, but somehow.
I remembered those months after September 2009. The surgeon removed my cancerous right breast, and refused to do the bilateral surgery until later. I spent a few months with one breast, like a Cyclops, feeling like a freak, my fake breast stuck in a bra, hating my body and what it was doing. My right side wasn’t just an absence – it was concave, not flat. Was I still a woman? Well, what if I became that person, except entirely concave up top? Would this be entirely disgusting to all who perceived me? At this time, people can “forget” I have fake reconstructed breasts. They seem – most of the time – to keep up the act. They’re cold in the winter because they don’t conduct heat like usual (are they dead?)
People don’t have the energy to keep up with this stuff. Hell, I don’t have the energy to keep up with this stuff. Most people want to know one thing: “So, are you cancer-free now? Great!!” And then we can change the subject and they can tell me what they need me to do or to be. With most people, I really don’t want to unpack this stuff anyway. It feels gross, like opening up a wound in front of someone. No one wants to actually know your wounds. People want to mail you sympathy. Everyone has their own wounds; everyone is knee-deep in grief and confusion. Everyone. I get it. In the larger context, I’m alive. I’m not in the hospital. I’m probably okay.