The other night, like most nights, I wake up several times, drenched in sweat. I get up. I pee and peel off all my clothes and change into new ones. I drink whatever is in the glass on my nightstand I am so dehydrated.
I go to the bathroom sink and splash water on my face to try to cool down before dealing with my soaking-wet sheets.
I am 32 years old and I am going through menopause. It’s temporary, and I chose to endure it when I got a life-threatening breast cancer diagnosis a year ago. But it’s a lot worse than I expected.
Going through early menopause is just one of many decisions I’ve made about my treatment program over the past 12 months. Right now, I’m a walking consequence of those decisions. In five years, I will have another choice to make: Whether I’m going to stop menopause and have children. Getting pregnant would pump my body full of estrogen and potentially stimulate any micro tumors that are floating around in my blood, which are undetectable of course. I am not looking forward to that decision.
When I wrote my first essay about having breast cancer for POLITICO Magazine after my diagnosis last year, I was struck by how many cancer survivors and fellow patients got in touch with me, welcoming me to “the cancer club.” At first, I didn’t want to be in the club. For one thing, it was full of “sick” people, and I wasn’t ready to join the ranks. For another, I didn’t think I needed it.
Oh, how wrong I was. Now I realize what the cancer club really is. It’s a real network of patients who pass advice to one another—in my experience, over social media—about how to pick treatment programs and how to deal with their side effects. (My favorite cancer club recommendation? Taking Claritin to help with bone pain caused by a drug intended to keep my white blood cell count up so that I can keep receiving chemotherapy. Also, ginger candies.)
If I’ve learned anything over the past year, it’s that nothing—not even being a health care reporter, not even having a scientist as a father and a doctor as a sister—can prepare you for the immense number of complicated, sometimes life-or-death decisions the disease and the system force you to make about your own treatment, all on your own.
Here’s what I mean: There is a standard protocol for treating cancer—for me, that involves chemotherapy, hormonal therapy, surgery and radiation. These treatment programs are best practices based on the strongest available data for my type of cancer. What most people don’t realize is that patients need to decide on their own whether to undergo their standard treatment regimen—and then whether to undergo anything else beyond it, including everything from clinical trials or experimental drug programs that haven’t been approved by the federal government yet to less well-studied holistic approaches such as diets and supplements. While doctors can guide you through decisions, when it comes to breast cancer treatment, few will make them for you.
This is because many of the choices women are forced to make are really personal: like, whether you ever want to have children, or how much of life’s pleasures you are willing to give up to stave off the disease. Different doctors, by the way, also give conflicting guidance. That is where the cancer club comes in.
In all, I can think of six major decisions I made over the year, the consequences of which I am now living with.
The first three (after deciding to proceed with chemotherapy and surgery)—where to get treated, whether to participate in a clinical trial and then which one—were about life. The next three—whether to try and preserve my hair, which breast surgery to get and how badly I wanted to be able to have kids later on—were largely about living. While going through menopause hasn’t been fun, wrestling with these decisions has also changed me in a positive way, by forcing me to decide what is most important in my life. That has been the biggest silver lining to getting cancer.
But having to make so many decisions about my treatment program also opened my eyes to how disparate and overwhelming the health care system is and how intimidating it is to patients. I am one of the best equipped people to navigate it: I am a health care reporter and my dad works in the system as a scientist. Between the two of us, we have a lot of access to people and information, which is a privilege. Most patients aren’t so lucky.
And yet, I feel totally buried navigating the system much of the time.
Let’s go back to the beginning. It’s August 2018, and I’ve just been diagnosed with breast cancer. I’m only 31 years old. When write my last essay, I am still waiting to find out what type of cancer I have and how life-threatening it is.
It seems like forever until my surgeon, Dr. Brian Czerniecki—the head of Tampa’s Moffitt Cancer Center’s breast department—calls with the results of my final tests.
I have Stage II cancer in my left breast, he tells me. It feeds on estrogen, which is good for treatment, painful for my personal life. At the time, medical tests show six tumors in my left breast and three in my left lymph nodes, under my armpit. Because the cancer has progressed to my armpit, Czerniecki suggests I consider doing a clinical trial in tandem with chemotherapy before undergoing surgery and radiation.
What I hear on that phone call is that I am going to live. I know as soon as he says “Stage II,” that the cancer hasn’t advanced far enough throughout my body to be seriously life-threatening. I breathe for the first time in weeks and tune out his technical talk. I agree to come down for a meeting.
That Monday, my at-the-time new boyfriend (now fiancé), Lawrence, and I get up in the middle of the night to drive four hours to Tampa to pick up my dad, who is coming from Boston, at the airport. In the morning, the three of us meet with Czerniecki and my oncologist, Dr. Heather Han. The goal is to find out which clinical trials Moffitt Cancer Center has to offer me.
If I participate in a clinical trial like Czerniecki advises, I will be treated at Moffitt because the cancer center offers them—trials don’t exist at every hospital. If I don’t, I can get treated in Tallahassee, where I live and work, Han says. There is no guarantee either of the two trials will work better than chemotherapy on its own.
The first trial at Moffitt involves some of the latest immunotherapy drugs and the second has shown good preliminary results for patients with estrogen-driven cancer like mine. Han then explains the trials in details I can no longer remember. She wants me to make a decision by Wednesday, two days from now. Han and I are both eager to start treatment and I still have to qualify for the trial I select, which also takes time, something we don’t have a lot of.
The end of our roughly hourlong meeting begins the most stressful 48 hours of my life.
That night, my dad and Lawrence and I get a drink in our hotel’s lobby before dinner. We bring our paperwork describing the different trials with us, study them and debate their pluses and minuses. In my gut, I am leaning toward the one that has good preliminary results. It’s a much simpler trial and would require me to travel to Moffitt less often.
My dad says that’s not bad logic, but he wants more opinions. He calls his colleagues and asks them to help us understand the nuances. My dad is a geneticist who partners a lot on cancer research, but even he is out of his depth.
Lawrence stands up to get us a second round.
“He’s the one,” my dad, who has hated every boyfriend I’ve ever had, says to me. “A person who sticks with you through cancer sticks with you through life.” (One of my doctors later tells me a lot her patients’ marriages end in divorce.)
Getting to know Lawrence and our relationship through this terrible circumstance is another great silver lining to cancer. When your life is on the line, it’s important to stack those silver linings on top of one another until they shine really bright.
On Tuesday, Lawrence and I drive to Orlando so we can cover for our respective news outlets what was supposed to be Democratic gubernatorial candidate Gwen Graham’s primary victory party. Graham loses in a huge upset to Tallahassee Mayor Andrew Gillum. I spend the night live-chatting the historic moment—Gillum is Florida’s first black gubernatorial candidate in a general election—for POLITICO and pacing through random hallways on my cellphone trying to listen to advice from my dad’s friend, Dr. Michael Lotze, an oncologist at the University of Pittsburgh.
Lotze, bless him and his wonderful scientific mind, is intent on explaining the term “equipoise” to me. It essentially means that picking a clinical trial is partially just dumb luck because no one really knows which is better and that’s why it’s a trial in the first place. It’s experimental and I am a test subject. But I am participating in the trial because it could make my response to chemotherapy better, he tells me.
That’s the gist with both trials, but they’re otherwise very different. He tries to warn me about getting too many opinions; I disregard his advice.
I walk out of the women’s restroom where I finally land in my conversation with him and spend some of the night complaining to Pati Mazzei, the Florida correspondent for the New York Times, about my situation.
“How will I ever report through this?” I tell her as we lean on The Social’s bar in downtown Orlando at Graham’s event. “I haven’t even started treatment yet, and I’m already so overwhelmed.”
“You’ll learn,” Mazzei says.
On Wednesday, I spend much of the day in an email chain with my dad’s friends and colleagues who are trying to help.
The team is torn.
When immunotherapy drugs work, they work really well. And that’s appealing because I am decades younger than most women who get breast cancer and I want the most effective drugs I can get. (This treatment targets the immune system instead of cells and can keep cancer away for longer.)
But there’s a chance those drugs won’t work, and that trial involves a lot more tests and a lot more driving to Moffitt. It would also delay part of my chemotherapy. I ultimately pick the other trial, which has one additional experimental drug, which seems to be working well on women with estrogen-driven breast cancer like mine. I tease my dad that I could have just gone with my gut 48 hours ago and been done with the entire ordeal.
Instead of catching the hint, my dad gets hung up on wanting to test me for specific genes he thinks are related to the experimental drug. Czerniecki finally waves him off the idea for reasons I still don’t really understand.
So, I pick my clinical trial. Now, will I get treated entirely at Moffitt? Yes, I decide. I could choose to get a local oncologist in Tallahassee, where I live, but I don’t want to disrupt the continuity of my care. I am worried that more doctors equals more administration, which equals a higher risk for mistakes. (I don’t realize at the time that I am going to eventually get an oncologist in my hometown, anyway.)
My decisions mean that Lawrence and I drive 10 hours each week to Moffitt for the first three months of treatment so that I can receive my clinical trial drug and the first round of my chemotherapy each Friday. After that, we drive down again every other week for two months so that I can receive the second round of chemotherapy. (Luckily, 160 hours later, Lawrence and I are still together.)
The next major decision I make is just as important as picking a clinical trial but probably less talked about and less understood. That’s because there aren’t a lot of breast cancer patients who, like me, haven’t had kids yet. There’s a chance that chemotherapy could make me infertile. The risk ranges according to a woman’s age and the drugs she takes, but one doctor tells me my chances of infertility are about 1 in 10.
I don’t like those odds. So, Han offers to help setup an appointment at the University of South Florida in Tampa, where I can freeze my eggs. But another oncologist, Dr. Ann Partridge, discourages me from the idea.
Partridge studies breast cancer in young women at Harvard and tells me she has reservations about freezing my eggs because the process would require me to produce a lot of estrogen, which could potentially make my tumors grow faster. Partridge says she doesn’t typically discourage patients from freezing their eggs, but my risk could be greater since my tumors are still in my body.
“How badly do you want to have kids?” she asks me. If it’s the most important thing in the world to you, then freeze your eggs, she says. But the procedure could put my life in even more peril than it is now.
I want kids but I don’t want to die before I can have them. And, also, freezing your eggs costs thousands of dollars, and my insurance won’t cover it. So that decision turns out to be easier than I think.
Instead, I choose to put my ovaries to sleep through a shot once a month that will lower the amount of estrogen in my body. It will help protect my ovaries and my finite number of eggs from chemotherapy. It’s also just a good idea since my cancer feeds on estrogen.
In short, these shots will send my body into temporary menopause, Partridge tells me. It will last for as long as I get the shots. It will also exacerbate some of the side effects of chemotherapy: hot flashes, vaginal dryness, a lower sex drive and a kind of loss of sexual identity … but I don’t know that yet.
“Sex doesn’t work, like physically,” I tell a nurse practitioner I like a lot during the winter. She tells me it’s normal.
Lawrence takes my hand. I start to cry as I explain how I feel more like a vessel for some war going on in my body than I do a woman.
“You’re still hot,” Lawrence tells me.
Then on to the question of surgery. I tell the nurse practitioner my fears, which, I am embarrassed to admit, center on vanity.
Czerniecki, my surgeon, wants to just remove the tumors through a procedure called a lumpectomy as opposed to removing the entire breast through a mastectomy, I tell the nurse. The choice is ultimately mine, but I trust Czerniecki’s judgment.
Still, I have my reservations. “But the left breast is already smaller than the right breast,” I tell her. “I know they have to take a wide margin. I mean there are six tumors in there. I can’t imagine there will be any breast left.”
She nods. I feel like she’s really listening to me and notice how strange it is to feel so much warmth towards a person in such a sterile room.
You’ll just have to balance your body image with what’s safest for you, she says. A mastectomy and reconstructive surgery are both far more extensive procedures than a lumpectomy.
Lawrence tells me later the mastectomy sounds too dangerous and unnecessary. I know he’s right. I just don’t want to walk around with half a boob. And I feel shame for wanting to get implants if I’m not getting my breasts entirely removed.
“Honey, don’t worry about that,” Lawrence tells me. “Get your boobs if you want them. You’ve earned them.”
The final decision I must make before I can start treatment is whether to try and preserve my hair or to buy a wig or to go entirely bald.
Patients can preserve their hair through a “cold cap” process where they apply cooling gel and wrap their heads during chemotherapy. It works but it’s expensive and my insurance doesn’t cover it. My insurance also doesn’t reimburse me for purchasing a wig, which it turns out is very itchy.
So, I go bald. (Until it gets very cold, and then, I wear a hat.)
A woman who lives in Tallahassee and who also had breast cancer—a member of the cancer club—messages me on Twitter. “Seeing you bald and proud made me smile,” she writes. “I never had the guts to go without my hat. Hang in there.”
I tell her the message has made my entire week, but really, it’s made every single day a little bit sunnier.
“We stand bald together,” I write back.
I was feeling so positive that day. But then I returned to what I wonder every day: whether my treatment decisions mean I can never have children.
It’s hard to imagine surviving cancer without them.
The post I Thought Being a Health Care Reporter Would Make Cancer Easier. I Was Wrong. appeared first on Politico.