It was March 2007, and life was good. Sixth months earlier, I’d married my longtime boyfriend in a beautiful wedding on the beach in the Hamptons. After years of hard work, the restaurant business that he’d started (with a little of my help) had finally become successful enough that I could ditch practicing law to help him full-time and focus on my writing career. We had just closed on a cool house in our favorite neighborhood. Starting a family was next on our checklist.
I wasn’t ready to get pregnant immediately, but my husband and I were both well past our 20s, so we couldn’t wait too long. I’d been taking birth control pills for many years, and wanted to cleanse my system of them for a few months before trying to conceive. No doctor had advised me to do this; it just seemed smart to allow my body time to readjust and reboot after years of artificial hormones. So, about six months before my ideal conception date, I stopped taking the pill.
Though previously I’d had a consistent menstrual cycle, my period did not reappear. I knew from friends’ experiences that this was normal for the first few months after the pill, so I thought nothing of it.
But I also began feeling a bit weird. My joints were hurting, and I felt 90 years old. The pain was worst in the morning. I would lie in bed, awake, not wanting to get up because it hurt so much just to walk to the bathroom. I should have called a doctor, but for some inexplicable reason, I thought the problem was that we needed a new mattress. After trying to convince me that no, he had not had this mattress since high school and he felt fine, my husband appeased me by spending two Saturdays at Sleep Experts comparing Tempur-Pedic and memory foam. It eventually occurred to us that my pain might be the result of some hormonal fallout from the pill. I still hadn’t had a period, and now it had been three months.
I called my obstetrician-gynecologist, and she prescribed a medication over the phone to help jump-start my period. The medicine made me feel like I had a severe case of the flu, and I was crying every day for no reason. A week passed, and it still hadn’t worked. I called again and explained to the nurse that I was concerned about how bad I felt. The nurse responded with the helpful advice, “Well, if you don’t want to take it, that is your decision.”
So I switched doctors. Ob-gyn No. 2 told me that if the medication was going to work, a week of taking it would have already produced a period. She ran blood tests to see what was going on.
A couple of days later, she called to tell me the “good news”: She knew what the problem was. My prolactin level was elevated but not extraordinarily so. Prolactin is a hormone that stimulates lactation during pregnancy. Elevated prolactin levels in nonpregnant women can result in loss of menstrual cycle, infertility, and even lactation. While there are several things that can cause a high prolactin level, one cause is a pituitary tumor. My new doctor told me that I needed to have an MRI of my brain to see if I might have one of these “small” tumors. Not to worry, she said; they are treatable with medication.
Despite her reassurance, I was nervous. In my family, medical problems tend to escalate into much worse situations than expected, and the most recent example was simultaneously unfolding at Baylor hospital. My dad was fighting very serious unexpected complications from surgery. I tried to think positively, that this was going to be as minor as my doctor predicted. Given the situation with my dad’s health, I decided not to tell my parents until I had good news.
With the help of xanax and a Michael Bublé CD, I made it through the MRI despite severe claustrophobia. When the obstetrician called with my results, her tone had changed dramatically. The tumor was much larger than she had expected—a 1.5-by-2 centimeter mass, and it had recently hemorrhaged. She told me to see a neurosurgeon immediately.
“Like make an appointment or drive to the ER?” I asked in disbelief.
“I would try to get seen in the next 48 hours,” she said.
I was desperate. “But they can still shrink it with medicine, right?” To that, she said this was out of her area of expertise.
She faxed me the MRI report, and even I could infer the cause for concern. It said that the tumor was a hemorrhagic pituitary macroadenoma, it was causing my optic chiasm to bow, and it had probably invaded my right cavernous sinus and had displaced my pituitary stalk.
I can’t even get an appointment to get my eyebrows waxed within 48 hours, so I wasn’t sure how I was supposed to get in to see a top neurosurgeon in that time frame. I was scared, but I did the only thing there really is to do in this situation: I switched into research mode.
I read everything I could find online about these tumors. I figured out I should get opinions from a neurosurgeon, who obviously treats with surgery, and an endocrinologist, who treats with medication. I looked up D Magazine’s list of Best Doctors for the last several years. I called all of my doctor friends. I called the few people I knew who had personal experience with brain tumors. I called everyone except my parents.
I started a notebook and kept organized notes, cross-referencing the Best Doctors lists with the referrals I received. I printed out the potential doctors’ education and work histories. I was a snob about where they went to school. I narrowed down the list to the top doctors I wanted to see and called to make an appointment with all of them. If they all recommended the same thing, I’d know I was getting the right treatment.
To my surprise, within 24 hours, I had gotten appointments in the next week with all the doctors I had called. This must be really bad, really unusual—or both.
I picked up my MRI scans on the way to my first appointment. I kept glancing over at the oversize folder on my passenger seat as I drove. Surely I wouldn’t be able to see the tumor with my amateur eye. I pulled out a sheet of images and held it up to the window. Even at a glance, I could clearly see a big white blob in the middle of my head. That couldn’t be it, could it? That had to be part of my brain.
Minutes later I was sneaking around Baylor hospital with my big MRI folder, hoping I would not run into my mom. The first neurosurgeon confirmed that the white blob was, in fact, the tumor. He assured me that it was benign. The most serious problem was that the tumor was so big it had stretched my optic nerves up in a U shape, and they are supposed to be straight across. This causes loss of vision eventually, usually starting with loss of peripheral vision. Vision can be restored by removing the tumor if caught early enough, but waiting too long can result in permanent damage. Based on how far my optic nerves were stretched, the doctor thought I might have lost some peripheral vision already.
There are many types of pituitary tumors. Some of these tumors secrete prolactin and can usually be treated with medication. Some tumors, however, do not produce prolactin but can still cause elevated prolactin levels (though not as high) because the tumor interferes with the signals to the pituitary gland. This is called “stalk compression effect.” It is impossible to tell with certainty which type it is from an MRI. But after analyzing the images, combined with my only moderately elevated prolactin level, the first and second neurosurgeons believed I had a cystic tumor that was not producing prolactin. Therefore, they did not think it would respond to medication. Both strongly recommended removing it with surgery immediately.
The surgery is “transsphenoidal,” which means it’s performed by going through the nasal cavity and then the shenphoid sinus to reach the tumor.
One problem is that the pituitary gland often has to be removed along with the tumor, in which case the patient requires hormone replacement for life, and pregnancy can be achieved only through hormone manipulation. Even without full removal of the gland, some women need fertility help afterward.
I read the potential risks of the surgery and was uneasy about having someone cut out a tumor that was pressing on my optic nerves—especially given my father’s recent complications with surgery.
So I consulted two endocrinologists. Both told me that I could try the medicine as long as my vision was not already compromised or did not become compromised while on the medication. The endocrinologist I continue to see today is Mark Leshin, M.D., at Baylor. He explained that 25 years ago, surgery was always performed on these types of tumors, but it was discovered that they often grow back. So, if prolactin is elevated and vision is not compromised, trying the medication first is worthwhile. Plus, the medication does not affect fertility.
I had my vision tested—I have never wanted to pass a test so bad in my life—and it was fine. I started the medicine. But I was advised that I still needed to have a neurosurgeon involved. There was no guarantee that the medication would work.
I had one neurosurgeon left to see. During my research, Bruce Mickey, M.D., professor and vice chairman of neurological surgery at UT Southwestern Medical Center, had come up on the Best Doctors lists and in many conversations. He is considered one of the best neurosurgeons in the nation. I instantly liked him and decided if I have to have surgery, this is my guy. But, unlike the previous neurosurgeons, he, like Dr. Leshin, recommended trying the medication first. He explained that in the past he did not believe that cystic tumors, even if they were secreting prolactin, were likely to respond to antisecretory therapy. But recently he had seen two patients with similar tumors and similarly low prolactin elevations whose tumors had responded nicely. He predicted that mine would too.
I finally felt relieved, and I came clean to my parents. But my ordeal was not over yet.
The prolactin inhibitory medication is Cabergoline. A few days after I started it, I began having chest pain and difficulty breathing. At one point it got so severe that I walked out of a meeting and drove myself to the hospital.
Results of an EKG were normal, but my breathing was found to be somewhat impaired. These symptoms were not on the list of known side effects of Cabergoline, and no doctor, not even a pulmonary specialist, had an explanation for them. In my opinion, there was no question it was related; it would start after I took a dose and would gradually subside. I’d take the next dose and the symptoms would start again.
At night I’d hold a pillow to my chest to ease the pain. I’d ask my husband to keep checking on me to make sure I was still breathing. I felt so bad that we didn’t socialize much for several months. We bought the first two seasons of Friday Night Lights and stayed in watching episodes. After each program, we’d look at each other and ask, pathetically, “Another one?” until we couldn’t stay awake any longer. After those, we moved on to House. I went from fantasizing about Tim Riggins to fantasizing that Dr. Gregory House actually existed and could fix me.
Every time I was supposed to take a pill, I’d hold it in my hand, and I’d have to talk myself into swallowing it. It was either this or surgery. I kept hoping my body would adjust to it. Finally, the pain subsided.
The joint pain was another mystery. My wrists were still hurting so bad that I couldn’t throw a ball to my dogs, write longhand, or use scissors. It took a long time to determine that this was probably related to my thyroid. When I stopped taking birth control pills, my thyroid first became hyperactive and then hypoactive. When it stabilized at a hypoactive level, I started taking Synthroid. Joint pain is a rare side effect of thyroid problems. As my thyroid got better with Synthroid, the pain eventually went away.
After six months, I had a follow-up MRI. The results showed that the tumor had shrunk to about half its size. The doctors agreed that surgery was not necessary and I should continue with the Cabergoline. My husband and I made up for the gloomy year by going to Rio to celebrate.
The Pregnancy Debate
My period finally returned, so once I had a good report from the MRI, I brought up pregnancy. The doctors agreed that I could try to conceive, but there was disagreement as to whether I should continue the Cabergoline if I became pregnant. There are no known links between the medicine and any birth defects or danger to fetuses, but there also is not a lot of historical data regarding pregnancy and the medicine. One doctor said that given the large size of my tumor, he would prefer that I stay on the medicine if I became pregnant. Another said to stop taking it while pregnant unless I started having headaches or problems with my vision. I met with a high-risk ob-gyn who said she’d take care of me either way.
I figured that given all I’d been through, it would take awhile to conceive. Miraculously, I got pregnant the first month possible.
Because of the side effects I had experienced while on the medicine, I decided I didn’t want to risk what effect it could have on a developing baby. If I took it, and the child had any health problems, I’d always have to wonder. I didn’t have any vision loss during the pregnancy, so I stayed off the Cabergoline the entire time.
Story, my daughter, was born in December—perfect in every way. A week later, I started back on Cabergoline. Although the tumor probably grew during my pregnancy, we’re hoping it has begun shrinking again. I will have another MRI soon to check.
These tumors do not grow overnight. It’s likely I had mine for years. But other than one severe headache I remembered having at a wedding in Santa Fe—which I attributed to a combination of champagne and altitude—there were no signs that anything was wrong.
Ironically, in women, these tumors are often discovered before they grow excessively large because one of the first symptoms is usually the loss of menstrual cycle. Being on the pill had masked the one symptom I would have had, because it creates an artificial period every month. Had I known about this potential danger, I’m not sure I would have taken the pill at all. Even if I had, I would have taken breaks from it to make sure everything was working properly.
Nonetheless, I am extremely thankful that my tumor was not something much worse. My story had a happy ending—one that happens to be named Story.