art by Kirsten Kramer

Goodbye to all that: Quitting hormonal therapy

Fight malignant tumors already in your body with science. Do whatever the hell you want otherwise.

I saw my surgeon over Zoom about a month ago. We don’t have much to do with each other since he removed my cancerous tumors from my left breast and lymph nodes about a year-and-a-half ago, but were meeting to discuss my most recent scans, which showed I am still in remission. (Yay).

During that conversation, I saw him see me, and how badly I had regressed since I entered a second phase of treatment, focused on preventing cancer recurrence, after entering remission. It had been an extra-long time since my surgeon had seen me because he blew me off for our first meeting since he removed my tumors, sending his physician’s assistant instead, which I later chewed him out for and is probably the reason why he showed up this time. 

(And so, maybe because of my aggressive attitude, which most see as a negative side effect of treatment, I am successfully walking away after two years of hormone therapy. Just saying)!

He was stunned. I could tell first by the look on his face and then by the main word he spoke to me: quit.

“Just quit,” my surgeon told me. “You look terrible.”

My husband and I were speechless. Even though I have been screaming from the rooftop how fucking miserable I am as a 33-year-old cancer patient, he was the first person to suggest I exit the program about three years early. 

Because I am so much younger than most women diagnosed with the type of breast cancer that eats my favorite drug — estrogen — I have been on an aggressive regimen of hormonal therapy since September 2018. 

About a year ago, I wrote for POLITICO Magazine about how much I miss estrogen. I’ve been in drug-induced menopause ever since and it is complete hell. (Doctors claim it doesn’t affect some women. I have no idea if that’s right but it’s certainly not my experience or the experience of anyone I know). 

Since estrogen has been drained from my body through the combination of two main drugs, the devastating side effects of which were exacerbated by chemotherapy, I’ve completely changed as a person. 

Not only have I developed cystic acne for the first time in my life, which gives me nauseating migraines and makes it hard to sleep, my hips ache constantly. Estrogen makes bone marrow, and for some reason, the lack of it is especially painful in my hips.

And, as many women who have gone through menopause, such as my mother, can attest, my mood has completely altered. I am less patient and more aggressive now. 

(I am sorry to all of my sources who have put up with me in the past two years, but not to my asshole friends, who I have no regrets about telling to fuck off for not calling during cancer).

The surgeon was responding to my irritability and my achy bones, but also and more specifically, the acne on my face and the depression that has so completely spread throughout my body that it has transformed my once-sunny demeanor. 

It outrages me that people would be surprised by these changes, but they always are. In addition to being raked through pharmaceutical-drug coals, the health system has beaten all other life out of me with its incessant bureaucracy. And that’s really saying something coming from a person who got promoted, planned a wedding and bought a house during 10 straight months of chemotherapy, an experimental drug, surgery and radiation. 

This is literally the first time in my life I have experienced the truth of having ‘nothing more to give.’

“You are in control of this thing,” the surgeon said. “So, walk away.”

I know this man in a little different context than I know my small army of other doctors, because he is a loose colleague of my father, a scientist in Boston.

When I was first diagnosed with cancer in August 2018, he was one of the first people a close family friend and oncologist called, for instance. He’s been my doctor since day one. And because of that, I think he sees me more as a colleague’s kid than a revenue head for the hospital, which I am sad to say is how I believe most health care workers see us. 

I think he was sent by God to tell me exactly what I needed to hear from just the right person. I think he probably saved my life for the second time in two years.

I took his advice to heart. So, I am quitting. And boy is it liberating. 

(I literally launched a company after quitting the health program). 

*

Before I get much further, I want to stress the importance of finishing active treatment. This is the first and main and most important phase of treatment, the goal of which is to eradicate your body of cancer. I believe this is the only way to fight malignant tumors already in your body: with science. 

That said, there’s a lot about health that our system doesn’t acknowledge or consider because it hasn’t figured out how to profit from it, and so do whatever the hell you want otherwise. This is my advice to patients after reporting on health policy at the state and national level for four years and enduring two full years of cancer treatment as a patient. 

In short, listen to your gut, because our system is fucked up and will take advantage of you if you let it. And there are always tradeoffs, even if your doctor hasn’t taken the time to explain what they are for your particular situation. 

I hope this essay and my others will help you and your loved ones see a flicker of light in the long, dark tunnel that is health care and begin to translate what I’ve learned to your own diseases. 

For I believe that we will never solve our American health crisis until each patient takes their own power back. I have launched Barred Owl Press to assist in this effort.

Let us now turn to my own health care case. I am a 33-year-old female, recently married and without children, but I want them. These facts are relevant to my decision, as is the basic fact that I am currently in remission from cancer, meaning I no longer have active tumors in my body as far as science can tell. 

There are two other main factors that went into my decision to quit the program: my quality of life and the cystic acne that developed during chemotherapy and menopause that I still have today. 

But there are so many more factors at play here, which I explained to the surgeon over Zoom that day. 

“It’s just been one dumpster fire after another since treatment ended,” I told him, my husband Lawrence nodding emphatically at my side. 

From there I went into what seemed like a 20-minute snippet of a tireless ongoing monologue. 

There’s how I was forced to change insurance twice through no fault of my own, which probably kept me on the phone with various people in the system for, I don’t know, an extra 20 hours of my life. It sounds like nothing, but those were mind-numbing hours I will never get back. I will remember talking to those people in my sleep for years to come.

There’s the old-man pillbox I was forced to buy to keep track of all my drugs I became hooked on in an effort to rid myself of hot flashes, a side effect of menopause. The drugs didn’t work but my addictive genes sure did and soon my body needed more and more of them, a danger to my health. 

There’s all the time I’ve spent hanging around hospitals, places I’ve grown to feel, fair or not, are where you are more likely to contract illness rather than be relieved of it. 

There’s how my vagina dried out because of menopause, causing sex to hurt for the first time in my life, other than the first time. 

There is the year I spent in a toxic relationship I had with my local oncologist after Moffitt Cancer Center in Tampa booted me out the door because I was no longer ingesting chemotherapy for a sticker price, i.e. without insurance, I once heard a physician quote at $500,000.

There is the public withdrawal I went through, from an anxiety medication my local oncologist prescribed me, which caught me by surprise. There is the withdrawal I went through from all of the other medicines he increased because I was complaining about headaches, for which he tried to send me to a psychiatrist, the cause of which turned out to be cystic acne, like I originally suspected.

“I knew someone was going to bring that up,” my surgeon said, referring to the suggestion that I see a psychiatrist for the first time in my life. “That may be something for later, but right now, I think you need to get off all these drugs.”

And then my surgeon asked an important question: How long have you been on hormonal therapy?

Two years, I told him. 

“So, you’ve already gotten most of the benefit anyway,” my surgeon said. 

What did he mean by that? He meant that there is diminishing returns to hormone therapy after a certain point, around two years, which my other physicians also failed to highlight. 

(I don’t know by what percentage the returns diminish because I haven’t seen another oncologist since and the statistics online are confusing. I just know that’s what he said. I’ll do more work on this and follow up).

Stacking the diminishing returns on top of my growing dependence on pharmaceutical drugs that each of have their own array of problems, mood and acne, the program seemed pretty absurd. Add to it the fact that your 30’s is an important decade for building bone marrow to prevent osteoporosis down the line — and remember, estrogen makes bone marrow — and it seemed outright silly. 

I believe most decisions become obvious the more we break their related problems down. In my case, it was weighing the benefit of more treatment against all the side effects. And, yeah, it became pretty obvious. It should be like this for you, too.

There is inherent risk in quitting. I’ll do my best to nail it down. But right now, I don’t care. All I care about is getting my life back.

And guess what? Even though I still haven’t gotten my period back, i.e., my body is still waking up to glorious estrogen, I had pain-free sex this morning. #worthit.

 *

Read about my return to treatment.

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