Sunday, November 16, 2008

"It's probably nothing but..."

The first time I heard "It's probably nothing but..." I was fifteen years old. I was at the Children's Hospital in Boston, and a doctor was giving me my first Gynecological exam. She said to me, "I know you have extensive periods, and it's probably nothing, but we want to test your estrogen levels." I had one test done, but because I wasn't a regular patient of this doctor, she followed up by telling me, "I'll send your results to your regular doctor", and I never heard about this again.

The second time I heard this, I was sitting in an emergency room in Valencia, California. My boyfriend, at the time, found me passed out in the bathroom of my dorm, and in a sweaty lump. I had a swollen tongue, my face was sunken in, and my fever spiked at 104 degrees. There were lesions in my mouth, and it appeared as if I was infected from some sort of spider bite, or a severe case of tonsillitis. I was twenty-five years old, and I had to get my tonsils out. But, the doctors there took a test on the infection with the words, "It's probably nothing but..."

My blood tests were showing positive for cancer cells, but they didn't know exactly where this was, and because I was due for surgery in a couple of weeks, I wasn't going to learn the problem until after I had recovered from the fever, and surgery was completed. The doctor wasn't sure I was actually ill with cancer, or if the tests were misleading them. They did know I had a history of tonsil issues that started when I was about four years old. They did know that I had so many infections the tonsils were pocketed and scarred. They did know there was now a history of massive infection likely caused because the tonsils stopped working as a filter for bacteria.

It was my second year of graduate school. The jobs I had included mailroom clerk, resident assistant, security guard and costumed animal at the nearby Magic Mountain, and I had a full load of classes on top of this. You'll start to note that from the age of 14, until I was 39 years old, I never worked less than two jobs. It wasn't a matter of keeping busy- it was me, being on my own, trying to survive the best way I could. From the time I was 18, until now, I've also done a stand-up show that has gotten me through some pretty rough stuff. If you can't laugh, you will cry, and I didn't want to buy kleenex in my free time. I never HAD free time!

My boyfriend drove me into the surgery, and we let my family know how I was doing. The operation was supposed to take 45 minutes, but I was there for almost three hours. It turns out that the tumor they were going to hunt for in the weeks ahead was part of the problem. The surgeon said, "Oh yes, it's probably nothing, but we took about a fistful sized mass from just below your tonsils that was resting above your pharynx." While I was healing, I no longer had the tumor, but during the post surgical events, my boyfriend went back to his ex.

There was a lot of that going on when I was in my twenties. I used to think that I was used to sort out whatever issues the guys had with whomever they dated before me because in 18 cases, they wed the ex. Yes. I was the cure for breaking up with someone. Unfortunately, the tumor that was removed didn't seem to solve that issue, and during one of my bed rest days at the dorm, I was told I was being left for the ex gal pal- whom he decided to talk to while I was in surgery. Nice. Glad to know I was able to help!

During the course of the recovery, I was transferred to a new physician at Cedar's Sinai in Los Angeles. I had to rebuild muscles in my neck, and I had to undergo a form of chemotherapy. As a student, my insurance was limited, so I was under the "testing" program from the UCLA Medical Center. I was given six months of a treatment that I still don't know the exact name of- but it seemed to work just fine. Once a week, I would drive to Los Angeles, and sit in an outpatient cancer center, with an IV in my arm, surrounded by other women and men who were doing the same. Some of us met for tea at Gilda's Club, which was a newly opened support center in Santa Monica.

It was there I met other women who had been told "It's probably nothing but..." Some had breast cancer. Some had lung cancer. One had leukemia. All of them had been told "You're not really sick." Women are often told by doctors, "You're probably just stressed from family", when in fact they are ill. Some of us have "normal" ranges in our blood tests for years before someone finally sees the real issues. There was a woman in the group who had a goiter, and I had never heard of one before.

Her neck was swollen so much that it appeared as if she swallowed a grapefruit whole. The doctors had told her that "It's probably nothing.." and one even dismissed the ever-growing lump as "eating too much". She went to Cedar's after she had an allergic reaction which prevented her from breathing. When the EMT couldn't put in a trach. tube, she was finally given surgery. Unfortunately she was one of the very few who end up with throat cancer as a result of a thyroid tumor, and I watched her decline for several months before she finally had a turn around- and now she's happy, living in Orange County, and raising her five dogs.

The question for this blog- What was your response when the doctor said, "It's probably nothing but..."? Did your Nothing turn out to be something? How do you think doctors should speak to us without scaring us?

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