This entry introduces a lot recurring themes in the days leading up to and following my diagnosis: roadblocks, advocates, the dichotomies of the internet, and Boyfriend nagging me to do what is best for me…even if I don’t want to do it.
Roadblock: Planned Parenthood
A big roadblock for me at more than one juncture was Planned Parenthood. I know many women who love Planned Parenthood and use their services regularly. I think that Planed Parenthood deserves all the funding it gets and more. However, I think we need to be honest about what Planned Parenthood currently provides. Planned Parenthood is about contraception. Nothing wrong with that. In fact, I think contraception is SUPER important.
I think becoming a parent (or not) is the most important decision most people make in their lives. My dad felt being a parent was the most important job a person could have. He would say that whether a person was a CEO or a janitor, if they died on Monday someone new would be in their job by Friday. But, for their children the world would never be the same. Whether you love your parents or hate them, very few people are ambivalent about the people who raised them. No one ever says, “Oh yeah! My mother. I remember her…Wow. I haven’t thought about her in years.”
Parenthood is something that should be planned. That is what Planned Parenthood is for.
In my opinion, Planned Parenthood is not for women’s health in general and it is definitely not for cancer screenings.
I have long listened to my fellow feminists talk about the importance of Planned Parenthood as more than a place women go to have abortions; but as a place where women can have all of their gynecological needs taken care of. And, you can get your basic annual exam done at a Planned Parenthood. Depending on your income and insurance situation, you can probably get it free. I know (from friends’ experiences) that these tests include PAP Smears (which test for cervical cancer), and I believe some Planned Parenthood Locations even perform follow-up tests and treatments for cervical cancer (such as colposcopies and LEEPs… this based on a Google search).
However, as Snopes and Factcheck note, Planned Parenthood does not provide mammograms. Many people may think this, because President Obama mentioned that they do in a presidential debate a couple years ago, but he was wrong. It happens. They do perform clinical breast exams (where a nurse or doctor feels you up to see if your breast has any abnormalities). Their clinical breast exams are typically performed by nurses or nurse practitioners, not MD’s.
Neither of these facts are atypical or problematic in and of themselves. My gynecologist (Dr. Coldtwat), did not perform mammograms at her office. The Navigator who gave me a clinical breast exam (after I found my lump), was not an MD.
However, Dr. Coldtwat’s office was able to offer a facility (covered by my old insurer) that would provide a mammogram for me. Planned Parenthood (over the phone), would not or possibly could not direct me to a facility that would provide me with a free or low-cost mammogram without first receiving a clinical exam, which there was a chance (without insurance), I would be paying $100 for. What I don’t mention in my vlog is that that they informed me the next time I would be able to get in for a mammogram (in Brooklyn or Manhattan) was more than two weeks later. This was not the first time Planned Parenthood had thrown such a roadblock in my way.
My First Time with Planned Parenthood
A year earlier, I had been having pains in my side that I began to worry (thanks to Google and WebMD) might be related to my ovaries and indicative of cysts or cancer. So, as I was uninsured I called Planned Parenthood about ovarian cancer screenings. At the time, I didn’t even know what screenings were necessary and neither did the woman on the phone. However, she was pretty sure Planned Parenthood didn’t provide any ovarian cancer services.
I did some research and found a pelvic exam, abdominal ultrasound, and blood test could all be used to rule out cancer. I called back and asked if I could come in for these tests. The receptionist informed me their pelvic exams were to be used only as screenings, not as diagnostics. They would not perform an abdominal ultrasound, unless I believed I was pregnant, and didn’t offer the blood test.
I ultimately found a doctor through The Actor’s Fund, who was able to perform the examination I requested. (He did so for free, by the way, because The Actor’s Fund is awesome).
You should know that the tests for ovarian cancer are not the most efficient diagnostic tests we have (the blood test would not detect an early stage cancer, as I understand it… Ultrasounds wouldn’t necessarily see a very small growth.), but they exist. And moreover, I know women who have had symptoms, gone to a gynecologist, been screened, caught their cancer early and have lived to tell the tale. So, why doesn’t a women’s health care facility such as Planned Parenthood provide these kinds of tests?
My Last Time with Planned Parenthood
Not long after my diagnosis, I was sent to Planned Parenthood to have some tests done that I was required to have before undergoing fertility treatments (which many young people undergoing chemo or radiation do, because of the risks these treatments pose to one’s fertility). Going to Planned Parenthood was my cheapest option, and thus recommended by The Navigator.
I was initially told it would be more than two weeks before they would see me, but I played the cancer card and they were able to squeeze me in five days later. When I went in, I was questioned about my birth control options. I informed them I use condoms.
I have learned that when you inform medical professionals that the only way you’re preventing pregnancy is condoms, they get panicky, and want to push other methods of birth control on you. I found this to be especially true at Planned Parenthood, where I am sure the doctors and nurses see a lot of pregnant women who “used condoms.”
I explained to the nurse that due to a genetic clotting disorder and my recent cancer diagnosis, any hormonal birth control options were out of the question for me. A few minutes later, a doctor came in. She informed me she wanted to give me a copper IUD.
She was concerned that without using a more reliable contraceptive method I was leaving myself open to pregnancy during chemo or surgery, neither of which would be positive.
I expressed various concerns to her about the IUD, including the fact that I was undergoing fertility treatments the following week and I didn’t want to have any device implanted that might compromise my fertility.
Here is where I learned an important lesson, friends. This lesson has come up time and time again during my treatment...Doctors hear the same questions all day long. So, if you ask a question similar to the question they are used to answering, they are likely to bypass your actual question and answer the question they know how to answer.
So, I say,
“I am having fertility treatments done next week. Will this device compromise my fertility?”
My doctor hears,
“Blah, blah, blah, blah, blah blah, blah. Will this device compromise my fertility?”
“No. IUD’s will not in any way compromise your fertility.”
She means that in the long-term, an IUD will not compromise one’s fertility. But, obviously the purpose of an IUD is to prevent pregnancy, and that is antithetical to the fertility treatments I was about to undergo. She didn’t hear my question. I didn’t understand the limitations of her answer. Honestly, it was a stressful day for me: 1) I had just been diagnosed with cancer. 2) I was squeezing this appointment in early in the morning before going to a wedding. So, I was on a time crunch.
But, she was a doctor so even though I felt rushed and stressed and wanted more time to think about it (all of which I expressed), she convinced me that this was the best time to do it. So, I did, only after confirming that if I changed my mind in a few days that I could have the device removed. She said that wouldn’t be a problem, but hoped I wouldn’t make that choice.
I went to the wedding that night, and woke up the next morning realizing I had made a huge mistake, and that the device had to be removed immediately, because obviously I couldn’t move forward with my treatments with the device implanted.
The Worst and The Best
The IUD had been implanted on a Saturday. Sunday I couldn’t get a hold of anyone at Planned Parenthood, and the ER I contacted said they wouldn’t remove it unless it was causing severe abdominal pain. They said it would be better for me to wait to visit my gynecologist or return to the facility that implanted the device. The Navigator gave me the same advice.
I called Planned Parenthood several times on Monday, and they told me they couldn’t see me for another week. I explained I had been pressured into getting the device, but was assured I could have it removed if I changed my mind. They didn’t care.
I explained I had cancer and needed to undergo fertility treatments days later, and keeping the device in could delay these treatments, which would result in either me delaying my chemo or foregoing egg-preservation. This could lead to me never being able to have children. I told them I would be holding them responsible if this occurred. The receptionist passed me on to a manager.
The manager repeated that wouldn’t see me for another a week. Did I mention I was stressed due to all the tests, and the cancer, and the bullshit? I was. So, outside of my hospital in Harlem, I screamed at this woman until I was sobbing. I said,
“Look. I have cancer. I was bullied by a well-intentioned doctor into getting a device I don’t need that if not removed could affect the entire course of my life. If chemo decides to shut down my reproductive system, I will never have children unless I am able to preserve my eggs. I can only do this if you remove this device. I have come to your organization for help over and over and all I find is red tape. When I found the lump in my breast, you were my first call, and no one was able to help me. You claim to help women in need. I am in need. You are now the only person who can help me. Why won’t you just help me?”
Like a recording on a tape machine, the woman responded:
“I’m sorry this has been your experience. If you can get to the Planned Parenthood in Brooklyn within 30 minutes, it’s possible they’ll be able to help you. I’ll send them your information. Is there anything else I can help you with?”
I got in a cab with Boyfriend and flew down to Planned Parenthood. I explained the situation to the receptionist when I got there, including that I had to be out of the office within 90 minutes. I was working that afternoon—the first afternoon since I had informed my employers about my diagnosis. I had to be on time or run the risk of seeming incapable of doing my job.
I was sent back to a little waiting room where no boys are allowed (an element of Planned Parenthood I understand, but can feel isolating), and Boyfriend went to class. I waited for 10, 30, 60, 90 minutes. Now I was sitting in the isolation chamber crying. Finally, I caught a Nurse Practitioner (NP) and begged,
“I have been waiting for more than an hour, I need to be seen. I have to get to work and I have to do this first.”
She looked at her chart and said I was next with her. Five minutes later she brought me in.
“I see you’re here for an IUD removal.”
“Why are you having the device removed?”
“Because I never wanted it in the first place. I came in for some tests prior to undergoing egg-preservation because I am about to start chemotherapy. The doctor was worried about me getting pregnant while I was undergoing treatment. But, I never wanted the device. I don’t know what I was thinking or why I consented. It’s my fault. I just want this to be done with.”
She stopped and looked at me a long time, which seemed apropos given the extent of my breakdown.
“I’m so sorry. That’s terrible. You can put on this gown and come back out. I’ll remove the device. It won’t hurt. It will take fewer than five minutes.”
I came back out. At first the NP was silent as she lifted my gown. Then, reluctantly, she spoke,
“What kind of cancer do you have?”
“Breast Cancer. Stage II.”
“Me too. Not now. Five years ago. I was a little older than you. I was almost thirty. But, the same, Stage II. Triple negative, so it was fast moving and required a fairly intense chemo regimen.”
I asked her a lot of questions, about her exact diagnosis, about the chemotherapy she chose, about her fertility…
“I went through egg preservation, which was lucky. My fertility did not return. But, again, I was a bit older than you and I have relatives who have fertility problems, so maybe that was always in the cards for me.”
She wrote down her cell-phone number and e-mail address.
“I know how difficult this can be, especially because there are so few women under 30 who have to face this diagnosis. Please call me. If you need anything, have any questions… Just know you’re not alone. There are people who want to help you.”
While I still have a lot of questions about Planned Parenthood, and the services they provide, I've come to some conclustions.
*Planned Parenthood support staff (receptionists, etc.) are generally under-informed, and not particularly helpful.
*Planned Parenthood does not offer many basic diagnostic tests for breast and gynecological cancers.
*Planned Parenthood offers services to men at some locations, but create an environment so hostile to men that I personally can’t imagine a man going to a Planned Parenthood for help. Planning Parenthood is a two-way street, and men deserve access to STI testing, contraception and cancer screening, just like women.
*Planned Parenthood’s primary focus is contraception, an image that they fight in the media due to conservative backlash; which ultimately leads women like me to rely on them for services they do not provide.
*Planned Parenthood provides awesome contraception for millions of women. My IUD was implanted and removed for free. You can get the pill, the morning after pills, abortion services for little or no cost, at a location where you will not be judged for the decisions you’ve made.
*Planned Parenthood provides free or low-cost testing for AIDs and STI’s. So important.
*Planned Parenthood’s website is really helpful and informative. If you have basic questions about contraception, STI’s, or cancer; their site is really easy to navigate and understand.*I believe the doctors and nurses at Planned Parenthood really do care about the women they treat. Regardless of my negative experiences, I believe the positive experiences I’ve had outweigh them.
*All Planned Parenthood locations are different. The services they offer differ from state to state and city to city. I have visited two locations inManhattan and Brooklyn. There are four NYC locations (Manhattan, Brooklyn, Staten Island and The Bronx). There are more than 4 million women who live in New York City.
It’s a big job.
So, now having shared my experiences, I ask you: Is Planned Parenthood doing their job? Are they keeping the promises they’ve made to the public? Should companies like Susan G. Komen be chastised for pulling funding if it seems most resources are not going toward cancer (especially breast cancer) screenings? Is it wrong for an institution to simply be for Planning Parenthood? Do we need more public health options to address issues such as cancer screenings?
I don’t know. Maybe you do. Leave some comments and give me your thoughts.