This letter represents one year of constant bleeding and anemia, one surgery, one month of recovery, seven months of therapy, and five months of phone calls. It is the culmination of effort, doctor's visits, advocacy, and endurance. And this letter really kind of embodies all the nonsense going on in our country about restricting women's reproductive freedom because this letter isn't just about me, it's about all the women I'm related to. To help you understand this, let me break it down into my current favorite: a list. Now, these will be things you've read in my blogs before, but there's a reason I'm going to repeat myself. One of my English professors taught that a "proper" thesis sentence should say something like "'this author did this thing using this, this, and this.'" We all know this, right? Anyone who has ever had to write a paper in high school or college has probably been taught this. "But the critical part," she said, "the part that many people forget is the last part: 'and here's why that's important.'"
- In 2018, I tried at least two different types of birth control pills, inserted and lost two separate IUDs, and implanted Nexplanon into my left arm. The pills were "free," but I had to sort of apply to my insurance company for both the IUDs and Nexplanon. It also was a weeks-long ordeal: first, a doctor's visit so he could put a request in to my insurance company; second, the pharmacy calls me to verify; and finally, another doctor's visit to insert the IUD or Nexplanon. None of the birth control costs me anything, but I still make a co-pay to my doctor each time I see him and pay for the parking or bus fare, too. And then when my body expelled both IUDs, my doctor required me to make another appointment for ultrasounds to make sure that they weren't just hiding somewhere in my body. I also had to undergo other ultrasounds to see if I had any worrisome masses in my uterus. None of the methods of birth control made a lick of difference and the ultrasounds were always inconclusive.
- In fact, I see my internist (who is a woman) and three OB/Gyns (all male) multiple times in 2018 to try to resolve my bleeding issue, and none of them once uttered "cancer." None of them uttered any kind of diagnosis. It was all a big mystery, apparently. One they threw birth control and hormone pills at. Oh yes! After one doctor prescribed hormones, the next doctor prescribed even more of the same hormone but at a higher dosage.
- None of these drugs-- hormones or birth control-- helped. I don't think they really expected any of it to help, but one of my doctors told me this would show due diligence and would be the basis for the insurance company to pay for the more invasive procedures, like a hysterectomy. So, in order to finally cure my disease, instead of testing for it and then removing it, we had to try methods I knew wouldn't but hoped would be effective for months with no results. In the meantime, the anemia is greatly restricting what I can and can't do, what I can and can't eat or drink, and the bleeding is taking care of everything else that might be fun in my life.
- I receive surgery that cures my disease and eradicates the anemia. I am in the hospital for only several hours, and my insurance pays for almost all of it, but I still pay a few hundred bucks out of pocket. The nurses give me a bunch of instructions orally when I'm still very groggy from the anesthesia, so I'm lucky that Charlie insisted on staying with me so that he can remember what I'm supposed to do. And when the orderly pushing me to the car in a wheelchair says he's actually going to drop me off about ten or so feet from my dad's car because it's too crowded or hot or something, I say okay. I forget that I've just had surgery and walking upright is hella hard. Charlie insists the orderly take me all the way to the curb where my dad waits for us in his car.
- We buy a bunch of stuff to help make recovery as comfortable as possible. Jenna has already gone through this exact procedure and provides lots of good advice. We buy pillows and food that will help me poop. I sleep upright on the couch for weeks and use plastic stools (that we bought for Noah when he broke his arm a few years ago) to prop up my feet. Charlie buys some stuff for the shower so I don't have to bend down to grab the soap.
- None of my doctors, pre-surgery, tell me what to expect during post-surgery. They say how long it might take to physically recover, but nothing about hormonal or emotional distress. I don't know that there will be any more than physical recovery and I don't even know to ask more questions. Even if I did, what questions would I have asked? There is no support following the cancer diagnosis except to say that I won't need any further treatment and boy was I lucky I was scheduled for the surgery. I don't know where to turn for answers about what my body looks like without a uterus or fallopian tubes. The eggs my ovaries are still churning out? Where do they go? No one says. I don't even have anyone to answer my questions about the cancer. All I'm told is that I'm so lucky because it's gone before we even knew I had it and so the impression I get is that I shouldn't have any questions.
- I'm feeling crazy. I'm feeling despair and deep dread every morning that I wake up. I am sad and cry often. I feel hopeless and lonely. I freak out when I go to the mall by myself, and all the fun I thought I'd have once I stopped bleeding doesn't actually manifest. One of my doctor's prescribes an antidepressant, which I choose not to use despite the extreme sadness that wells up within me every day.
- Instead, I begin going to therapy. I go once every week, and I'm lucky because my insurance covers everything except the co-pay. I'm also lucky again to have a flexible employer because in order for me to see my therapist, whom I love my therapist find through Meredith's recommendation, I have to take end my shift a half hour earlier every week. Charlie also has to rearrange his routine because we only have one car, which we share. I still feel not myself on the daily, and I have trouble coping with things that I never struggled with before, and I'm still not getting answers from my doctors.
- I get a call from the Queens Hospital Cancer Center in January 2019. They're following up with me, they say, and ask if I'd like to meet with a cancer nurse. Holy fucking shit! Months later! But I'm not even mad, I'm ecstatic and cannot wait for my appointment. She goes over EVERYTHING I went through and even sighs knowingly when I tell her how unsupported by my doctors I feel. When I ask her about what this means for my daughter, she suggests I see a geneticist and then follows up with me a few days later with their contact information.
- A week or two later, I see my doctor so she can refer me to the geneticist. This referral gets lost or something because the geneticist never receives it. For months I attempt to speak to someone at my doctor's office, and usually I'm put on hold endlessly before I hang up. TWICE someone answers and they sound as outraged as me that my referral hasn't yet been processed, but nothing happens until May.
I've maybe written to death my experiences of the last year, BUT HERE'S WHY IT'S IMPORTANT.
1. Regular access to health care and medical insurance
None of this would have been possible without medical insurance. Among the 97.4 billion women in the United States between the ages of 18 and 64, as many as one in five (some sources say one in ten) are uninsured. This makes access to quality health care a real challenge, but is not the only challenge women face. Among those insured, many women have been paying more for health insurance than men, and all it takes is a simple Google search to see that I'm not making this up (try "gender rating health insurance." Under ACA, gender rating became illegal, which actually received criticism. Gender, you see, was considered a risk factor). And even when insured, paying for all the out-of-pocket medical expenses can sometimes be impossible.
Women don't have insurance for many reasons. You can read a thousand articles talking about how lazy these women likely are because they probably don't have jobs or are too dumb to pay for insurance. I'm sure there are women out there who this accurately describes. Women also don't have health insurance because they make just enough money to not qualify for assistance but not enough to make regular payments themselves. For some women, their immigration status prevents them from receiving assistance. And then, an overwhelming number of women are eligible for assistance but aren't enrolled for a variety of reasons, some of which might be a lack of education about the availability of programs, a lack of education in general, or lack of access (not everyone has a computer or the time to go to an office or library).
Why This Matters:
Women without access to regular health care likely don't have a regular doctor and experience poorer health outcomes than women who have health insurance. Without access to preventative health care, which includes annual mammograms, pap tests, or even blood pressure or cholesterol screenings, they may delay diagnoses of chronic illnesses such as diabetes or hypertension, which may leave them in poor health. If they do seek treatment, they are left with debilitating debt.
Prior to ACA, insurance companies weren't obligated to cover birth control or maternity care. Most plans now are required by law to cover these costs. Access to birth control gives women the opportunity to decide whether and when to start a family, and which jobs or educational pathways to pursue. Having insurance increases the likelihood that women will obtain health care services, but doesn't necessarily ensure that health care is affordable.
2. Money, money, money
We have enough money to do the following: take off from work to seek medical treatment; pay the insurance premiums; pay for doctor's visits; pay for pharmaceuticals; pay whatever deductibles and out-of-pocket costs. I work two jobs and Charlie works more than 40 hours a week. We have two incomes, plus our children are old enough to take care of themselves, so we no longer have the added cost of childcare.
This wasn't always the case. For almost an entire year I was without health insurance and didn't seek medical treatment when I dropped a full bottle of wine on my foot and likely broke some bones. I didn't seek treatment when I began having anxiety attacks and chest pains (that were eventually associated with the anxiety I was experiencing and not heart complications). How would I ever have gone to the doctor those many times in 2018, had the surgery to remove my uterus (and cancer), and then sought psychological care afterward? That never would have happened.
Why This Matters:
Having health insurance protects people from having to absorb huge medical costs, but that doesn't make all services affordable. Not all procedures or pharmaceuticals are covered, and any unexpected injury or illness can result in a medical bill that can't be covered by a household budget. Medical expenses are more than just doctor's visits. They may include: transportation, parking fees, childcare, food, prescriptions, and tests. It may also mean losing money in the form of wages when a woman must take off from work to seek medical attention. You might think that finding affordable transportation to a medical facility here on Oahu might be no big thing, and maybe you're right. For an able-bodied person who can take off from work and drive herself to a hospital. Maybe less so for a blind woman who walks with a cane, and cannot take enough time off from work to catch the bus to and from the medical clinic.
3. Opportunity and advocacy
Charlie and I both have jobs that offer some flexibility. I could take off for an entire month after surgery and was confident that my jobs would be there when I got better. Charlie could take off from work to support me in the hospital and advocate for me when I was too weak to do so for myself. We are also both lucky to read at a level higher than the 5th grade, speak English as our first language, and have employer-sponsored health insurance.
Why This Matters:
In a broad sense, a woman's health is connected to so many other aspects of her life, including nutrition, housing and working conditions, education, sexism, and racism (just to name a few). I had employers who were willing to let me off of work to go to these many doctor's appointments and then recover from surgery. My husband has a job that offers excellent health insurance. I had the opportunity to seek medical services and pay for them. When I got there, however, who would help me?
I think I'm pretty well-educated in the standard sense. I also know how to responsibly do a Google search and wade through articles. I'm trained to do research and close reading. Still, there was so much I was ignorant of and I still have so many questions that have yet to be answered. And while I advocated for myself all through college and for my kids throughout their lives, I felt too foolish to ask my doctors what I considered stupid questions. I'd come home feeling dumb for not knowing and even dumber for not asking. When I finally was able to tell one of my doctors about my feelings of sadness and loneliness, he completely ignored me. "That's odd," he said and moved on. When I told another doctor, I got a more satisfactory answer (which is to say I got an answer at all) and a prescription for anti-depressants!
My anesthesiologist came to see me before he put me under to outline what I could expect post-surgery and what I should and shouldn't do. He was clear and professional and made sure both Charlie and I understood his instructions. Other than that, not even my own doctors were as transparent or forthcoming. My own internist told me that doctors can become so focused on diagnosing then treating an illness, they forget to educate their patients. I didn't even realize I had cancer until two weeks later when Jenna pointed it out! And last time I asked, Jenna's super smart, but she isn't a medical doctor.
It shouldn't be like this. We need increased education for women's health and safety. Not all treatment is necessarily safe or appropriate, and we need to be made aware of the resources available to us. Medical professionals should welcome and answer all questions to ensure that their patients understand all their options and all the information presented to them within an environment of transparency, mutual respect, and accountability.
In a larger sense, we need more research into women's reproductive health. More women need to be involved in clinical trials of treatments and products that are created for and used primarily by women. Women need more than just a husband or parent to advocate for them with their medical professionals, we need groups of people to advocate with and on our behalf to the policy makers who make laws.
*breathe*
So, I have this letter from Hawaii Community Genetics. Included in the envelope are forms I should complete before I go that detail my medical and family history. I am excited and nervous and hope that what I have to say is enough to warrant genetic testing. And even if it doesn't, I hope these people can point me to even more resources.
Because this letter isn't just about me, it's about the women I am related to and the girls who are growing into womanhood. My experience isn't just about me, it's about all of them as well, and finding more answers through genetic testing might be the key to a better life for my daughter, sisters, nieces, aunties, and cousins. This is one example how one woman's health and journey can be of service to many others. I whine that I didn't advocate for myself enough, but I did plenty. I was the one who continually made appointments with my doctors, who followed up when phone calls weren't returned, who kept pushing the issue even when those doctors sometimes seemed unimpressed with my symptoms.
What if things had been different? What if I still didn't have medical insurance (an incident that was not our fault)? What if I didn't have jobs that allowed me to take time off to see the doctor or be out of work for a month? What if I didn't have men in my life who looked out for me, gave me rides to and from the doctor, and took care of me post-surgery? I would still unknowingly have that cancer inside of my body, still be bleeding, still be anemic, and likely very depressed. None of the women in my family would be aware that they might also be at risk, maybe none of them would take what happens to their bodies seriously. Maybe that cancer would spread. Maybe other women in my family have similar experiences when it might have been avoided.
People talk about men making laws that determine what a woman can or cannot do with her body, and what most people think about is abortion. This blog is already too long for me to go into my opinion about abortion, but in case you haven't figured it out, I believe in a woman's right to choose to have an abortion under whatever circumstances she finds herself in. But this issue is about so much more than abortion! I mainly focus on issues related to reproductive health because that's been my journey, but women face many other gender-linked illnesses, such as: eating disorders, depression, Type II diabetes, violence against women, heart disease (women are more likely to die following a heart attack than men), and strokes.
I could go on and on. The more research I do, the larger my argument becomes. What this long-ass blog was intended to do was simply demonstrate how my journey, which culminates with this letter and an opportunity for genetic testing, is but a small example of how the health care system fails women and why it is important to empower women rather than restrict their choices.
Please don't substitute anything I've written here for medical advice or for advice in general. I just wanted to express myself. I feel the health care system failed me in many ways and that the new laws many states are enacting would not help the kind of issues I faced and likely wouldn't help a lot of the gender-related health issues most women face. Anyway, here are some of the resources I looked at when writing this blog. None of these, I think, are primary sources, but some of these link to actual reports and stuff. I think.
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