I’m exhausted tonight. I spent all weekend in the throes of a violent migraine attack, which I was unable to break with any of my usual abortive medicines—DHE, anti-nausea drugs, and strong pain medication. On Sunday my husband finally had to take me to emergent care here in our rural community, for the only thing that works when I get to this stage are a shot of Phenergen and a shot of Demerol. There are plenty of physicians who won’t use this combination to abort migraines. Some rely, instead on triptans, NSAIDs, and anti-nausea drugs. For most migraines, those abortive drugs may be the best options. But I’ve been having emergency migraines for over twenty years now. I’ve had nearly every combination tried on me, and I know what does and does not work on my gone-too-far migraines.
When my husband called our clinic’s emergency number Sunday morning, the doctor on call first said he was sorry but he did not use Demerol (or even have any) and I’d have to go into the city to an emergency room. An emergency room! Oh, Christ, I thought. I got on the phone and pleaded with him. “Look, if you send me to an emergency room, they’ll treat me like some junkie or addict. This is always how we handle it here at the clinic—it’s the only thing that works.” I tried through a fog of pain to explain my medical history and my migraine patterns. I would stop in the middle of my explanation and hand the phone off to my husband when I had to vomit. The doctor on the other end of the phone listened patiently to my garbled combination of anguish and expertise. Then he offered hope. It might be possible, he said, to get Demerol from the pharmacy. He’d see what he could do and call us back. When he called back, I was curled on the bathroom floor on a towel. My husband happily reported to me that the doctor had the pharmacy meet him, open up early, give him the Demerol, and said he would meet us in his office. I was grateful, so grateful, although I continued to dry heave in my stainless steel mixing bowl I cradled as we filled out paperwork in his office. The shots worked. I slept and when I awoke, the pain had subsided.
Such is life in a small town. He was a doctor who took the time to listen to the patient’s expertise. I knew a great deal about what did and did not work for me. In the end, he trusted that and went the extra mile to ease my suffering. I cannot begin to thank him enough.
In contrast to my doctor experience on Sunday, I’m afraid I need to start shopping for a new endocrinologist. Yesterday I had a scheduled appointment with my endocrinologist whom I’ve been seeing since 2003 when I was first diagnosed with a pituitary adenoma. He’s at a major university research hospital, and that was where in 2005 I underwent what is called transsphenoidal neurosurgery to remove that tumor. I’m lucky to live near such expertise—not to mention to have health insurance that covers my care there.
Sometimes I wonder if I’m trying to be the good student at the front of the class with this guy. I go to my appointments well studied and informed. I always have specific
questions for him—about medication, hormone levels, the location of the tumor on my pituitary, and specific treatment options. Several years back he told me I needed to lose fifteen pounds. I went back six months later twenty pounds lighter and have kept it off. I feel like I’m constantly trying to read him for cues. What is it he really wants me to do? I’m never sure. He’s good and in high demand and never seems to really remember who I am when I go into his office.
This summer I went back for tests to find out if the tumor had grown back—I was pretty sure it had since I could barely drag my ass through a day, was getting more headaches, and had the libido of Sheldon Cooper on The Big Bang Theory. After the blood tests and MRI, I waited nearly three weeks for the results. I called and attempted to get a hold of him for the results. Then, I tried to get a hold of his staff. I had no luck. Finally, I took a sneakier route and had my general practitioner call for me to get the results. Within a couple days he had the news, and it wasn’t good. Sure enough, the prolactin levels were up and the MRI showed alien growth. Shit!
The endocrinologist put me on Cabergoline, a dopamine receptor agonist, which helps in shutting down the production of prolactin. That, in turn, if it works, should help reduce the growth of my tumor. Yesterday I was to get blood tests to see if the Cabergoline was in fact working. I knew it would take a week at least to get the results, but knowing his track record on getting back to me, I asked him how would I be able to find out about the results. “Well, you can’t, really,” he stammered. “It’s really hard to. Unless they’re really high, we’ll probably not call you.”
“But I want to know what the results are regardless,” I countered. “Can’t I call your nurse? I want to know if the numbers are down or the same or up. Whatever they are.” He listened sympathetically but then said that he had work in four clinics, research, and unless there was a life or death situation, he simply didn’t get on the phone. I told him I understood that but still expected to get my records in some way. “There must be a way through the office,” I pressed.
When I left, I felt triaged out of the office. I kept thinking of all the other hormonal variables I’d like to discuss with an endocrinologist right now. Hell, I have a veritable Montana cowboy bar full of hormonal characters on the verge of a bar fight in my head and body. I am, like most pituitary patients, struggling with hormonal upheavals.
Take Estrogen for example. She’s the big ruffled babe with the pink cowboy hat, who in the past pretty much ran this place. She would ride in on a hot lathered mare from my long-since gone ovaries, flounce into the bar, and add charm and allure to the place. Now it seems she rarely comes to the bar, and if she does, she limps in from an Eldercare van.
And then there’s mercurial Progesterone who used to hang out with Estrogen. The two were quite a pair when we were all younger. Since the ovary ranch closed down, I haven’t seen her much. Not that I’ve really missed her. One minute she brought health and well being, giving sturdiness to the place. The next minute I’d turn around and she was busy pissing everyone off or depressing the hell out of everyone with her morose stories. I know she’s important, but she still scares the hell out of me.
Enter Testosterone—A lot of people think she’s too masculine, but this tavern-jacket, truck-driving bitch walks into the bar and demands that one bar stool. God help the patron who has it. I tell you, the girl’s got moxie and sex drive. I’m depleted right now and feel like I could hang out with her. We’d drink some beers, sit and cuss and ogle those bale-buckin’ guys in their Wranglers and 501s.
And then the hormone I’ve got too much of is prolactin. And Prolactin is like a cross between Carrie Nation and Phyllis Schlafly. She’s a moralistic prude that thinks sex is only for procreation. When she walks into the bar both bottles and spirits are going to get broken. She’s convinced that the only drink worth drinking is milk, so she pushes that, even when you don’t want to produce it anymore.
I’m never sure what’s going to happen between Dopamine and Serotonin. Dopamine is putting quarters in the jukebox and grabbing up friends, dragging them to the dance floor, and spinning to the music in wild abandon. Serotonin is running behind her trying to calm everyone down, reminding people to use condoms and common sense.
It used to be that this little bar room in my head kept a tenuous peace. Now, it’s always chaos, and I know that the tumor has a lot to do with it. Guess it’s time to find an endocrinologist who’s better acquainted with all the girls in my head.
(The idea to anthropomorphize the various hormones and neurotransmitters came to me after reading Sandy Hotchkiss's article "Hormones and Sexuality" in the book It Is All in Your Head: The Pituitary Patient Resource Guide. Hotchkiss explains the role various hormones play in our sexuality as actors on a stage. Being originally from Montana, I borrowed her idea in this piece, and went in a new direction with some particular to my situation. Her explanations in "Hormones and Sexuality" have helped clarify for me the confusing cast of hormonal characters that affect our libidos.)