Knowledge is not Necessarily Power

May 19, 2006 at 11:40 am (Uncategorized)

Ever heard of a disease called carcinoid syndrome? Me either until Wednesday when I saw the illustrious Dr. X.

As you already know, he was shocked at the number of tests I have had done by my specialists in New York. As an antidote he proposed….another test.

“I’m just perplexed why they haven’t done a basic test for carcinoid syndrome,” he said, after asking me if I’d ever had diarrhea. This seemed like a fairly broad diagnostic category.  I mean, has anyone ever not had diarrhea? To be fair, carcinoid syndrome can also cause an enlarged right heart, a symptom I have that has baffled doctors across the nation. You see, cardiac sarcoidosis causes the heart’s electrical system to malfunction, but it doesn’t typically cause one side of the heart to just get bigger.

Contrary to my wishes otherwise, an enlarged heart doesn’t translate simply into a capacity to love more fully or to be extra gutsy. A bigger heart gets thicker; and a thicker heart doesn’t pump blood as effectively as it should. Eventually this can lead to bad stuff. This is about the extent of my knowledge of cardiac functioning.

What has puzzled my doctors is that the horse dose of prednisone I’ve been taking for over a year has improved the electrical problems in my heart, but the right side keeps getting bigger every three months.

According to Dr. X, carcinoid syndrome occurs when a tumor develops in the GI tract. Apparently, this tumor excretes hormones, such as serotonin, that are activated in the lungs and then go on to impact the right side of the heart. He was blase about it all and made it sound like the tumor was really no big deal. Take the tumor out, he seemed to suggest, and you’ve fixed the problem.

He sent a note to my primary care doctor to order the necessary test. I won’t have to be injected with substances that are so radioactive I’ll have to stay away from my son for eight hours, like I did when I had my cardiac PET scan in February. All I have to do is pee in a container for 24 hours and then bring it to the lab to be analyzed. They’ll check my urine for extra quantities of the hormones that could be released by the carcinoid tumor. Hah. And they call this a test. If it ain’t invasive, it ain’t worth having, that’s my new motto.
Last night was Jay’s turn to put Andrew to bed. This is a process that can take quite some time. Andrew has many fine qualities; sleeping, however, is not one of them. I’ve actually seen the little fellow repeatedly slap himself in the face to stay awake on long drives. Knowing that I likely had at least a half hour to myself, I padded downstairs to check my e-mail and waste time on the Internet.

“Hey,” I thought. “I should see if there’s any information about this carcinoid stuff online.”

Unfortunately, I’m a pro at finding things on the web. I once wrote a book for high school students about conducting on-line research, and another writing project involved tracking down information about the most obscure Latino artists imaginable. I found stuff that no one else could.

There was a lot of material about carcinoid syndrome. Most of it was bleak. Apparently, the initial tumor is frequently malignant, which means it is cancerous. I’m not sure how that carcino prefix in carcinoid syndrome slipped by my radar. Even worse, the hormones it releases don’t hit the lungs until the cancer has metastisized to the liver. Metastisize is another word I don’t like, especially when it involves my liver, of which I only have one. Moreover, chemotherapy and radiation treatment are virtually ineffective against carcinoid tumors. If the tumor can’t be excised–which can’t be done if the cancer has played world domination in your body–you’re screwed. The median survival rate is five to eight years.

As so many of these medical web sites do, the Carcinoid Syndrome site had a handy checklist of the symptoms you’ll experience if your have the syndrome. You typically only get the syndrome once the disease has progressed into your liver. Diarrhea, heart palpitations, flushed cheeks, swollen face. “Shit,” I thought, as my fingers got damp and slippery on the keyboard. “Shit. Shit. Shit.” I didn’t notice the symptoms I didn’t have.

My heart dropped into my stomach, which was surging with extra bile. I felt panicked and really, really angry. “Great,” I thought, through the chaos of my swirling thoughts. “Not only do I have one rare disease; now I have some rare fucking cancer that’s going to kill me in five years.”

Jay should have come downstairs by this point to coax me to watch TV. But he hadn’t appeared after nearly forty-five minutes. I assumed that he was simply having a hard time getting Andrew to sleep, but I should have known better. After another half an hour, I snuck upstairs, now in full-blown panic mode, and heard both my boys gurgling and snoring from Andrew’s bed. Jay had cuddled up with Andrew and drifted off to sleep.

I’d like to digress now and talk about Jay’s sleeping prowess. He hates falling asleep, because he believes that time spent snoozing is time wasted. But he’s so very, very good at it. A friend of his swears that one time Jay fell asleep on his feet while leaning against an amp at a Therapy? concert. For those of you not familiar with Therapy?, I can only say that it is not soothing, restful music. Listening to it usually makes me feel like someone is scraping a fork against my teeth– a rusty, twisted fork. (But then I’ll take Therapy? any day over another of Jay’s favorite bands, Tool, who produced the poetic masterpiece, “Prison Sex.”) When we were going to our birthing classes, our lovely instructor, Lucy, would have us meditate for a few minutes before we practiced our controlled breathing. Jay would routinely fall asleep and start snoring during these centering exercises. I’m not sure we inspired Lucy with much confidence in our teamwork potential because Jay’s snoring so embarrassed and irritated me that I would resort to unfolding my legs from my lotus position and kicking him repeatedly until he jolted awake.

But that is neither here nor there. I tiptoed over to the bed and poked him hard. “What?” he said right away. He probably knows that particular jab spells trouble.

“You fell asleep,” I said in a stage whisper in a tone that suggested he had just been unfaithful in our bed with my best friend. “And I looked up that thing that Dr. X mentioned. And it doesn’t look good.”

I love Jay for many, many reasons, but his ability to talk me down from psychic ledges is one of his better qualities. As is his capacity to let my stricken tones slide off him. He knew simply to hold me and tell me he was so sorry that I even had to think about stuff like this. He told me everything would be OK and that he loved me. And then he told me that maybe I shouldn’t look things up on the Internet with quite such zeal.

He’s right. Living in the information age can make us feel only more clueless. I’m all for patients empowering themselves with as much knowledge as possible. But we have to exercise restraint. Look up any disease on the Internet, and it’ll sound like you have it. You could lose your mind typing your symptoms into Google and seeing what the search engine comes up with. One of the worst mistakes I ever made was searching for cardiac sarcoidosis in the newspaper and magazine database I use. It found dozens of autopsy reports. “So and so died at the age of 42 from complications from cardiac sarcoidosis.” And so on. For a disease that was so rare, a whole lot of people died of it. It took me days to shake off the gloom and fatalism that settled over me after that research session.

A good starting rule might be to only research diseases you know you have. Why worry about something that might not be? I’ll have the carcinoid syndrome test done next week and we’ll take it from there.

My mother often misquotes cliches. It provides the whole family with hours of amusement at her expense. But frequently her mangled versions are more insightful than the original, tired sayings. For instance, one time she said, “We’ll cross that bridge when we’re over it.” That, I think, is a hell of a good way to live.

After I had shut the computer down, Jay and I settled down to watch the season finale of The OC. There’s nothing like bad television to make you feel like you’re living.

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