Wednesday, December 26, 2007

The Mystery of the Invaded Breast

I have dealt with my cancer the way Hercule Poirot deals with a murder: I dug in to find the murderer with the hope of putting that culprit out of commission permanently. What was the motive of the invader who gained entry to my body and started knocking off my good cells? How did it get in? Why was I a target? And, most important, how do I keep this clown from returning?

I set myself up nicely to avoid estrogen-positive cancer—I did not take hormones, I breast fed both my kids, and I had no family history of the disease. And, while the plan succeeded on one level—I did not get estrogen-positive—it fell flat in a big way in that I got estrogen-negative, the more aggressive form of the disease. Yea, me. Good move. Why and how did this happen?

When I was first diagnosed, I started a notebook in which I wrote nearly everything my phalanx of doctors told me. It’s a pocket-sized red diary, and I decorated it with a photo of Venus de Milo. (Hey, at least I have my arms.) The first notation, May 16, 2006, is from the radiologist: “Positive for cancer.” “1.5 cm.” “Patricia, it’s not that bad.” Bless her. The last notation, October 13, 2007, is from my follow-up with the surgeon: “Mammo clear.”

The middle of the diary is a bit of a muddle. My docs didn't agree on the size of my tumor. The radiologist used the measurement from the sonogram; one oncologist used the size from the mammogram (2.1 cm); the surgeon and second oncologist used the measurement of the actual tumor itself after surgery (1.3 X 1.1 cm). Because they did not agree on the size, treatment options were all over the board.

And that’s why I started investigating on my own. I felt like I was in one of those eyewitness research studies, in which people observe a fake crime and then are asked to describe the perpetrator: “He was tall, dark-haired, with a beard.” “He was sort of medium height, slim, with red hair, and clean shaven.” “I couldn’t tell his height because he was so fat, but he was definitely blond.” “Are you sure it was a man?”

I needed clarity and information I could trust.

I realized I had to do research on my own to make sense of what was happening and ensure that what I was doing would benefit me long-term. The “right thing” is pretty difficult to determine when you’re learning all about a new disease and faced with treatments that go from nasty to vile. But I have been blessed with a curious spirit and a thirst for information, so I headed to the Internet and found medical studies that helped guide me. I used the Web sites listed on the left, all of which are rich with data, perspective, and hope. I generally avoided chat rooms because they just made me nervous, showing me options I hadn't worried about yet. I have a lively imagination and would probably end up fretting about my cancer spreading all over the place, including the living room sofa.

When I first met my oncologist, I asked for my pathology report and since then I have checked it over so much it is fraying at the edges. has a good explanation of how to read a pathology report. I ask for a written copy of every test I have, and I keep a folder on my desk with all this information. I call and ask for clarification of any report that is unclear. My red diary stays in my purse, ready for new data. I check new information against old, to chart my progress, maintain my balance, verify my direction.

I researched Western and Eastern medicine, finding wisdom equally in modern science and in the “alternative” form of older, natural medicine. When the two converged, as they often did in terms of diet, I felt I was truly close to some answers to my mystery. Two books became my guide: Dr. Susan Love's Breast Book and Sat Dharam Kaur’s The Complete Natural Medicine Guide to Breast Cancer . (Buy the first through Dr. Susan Love’s Foundation and part of the money will go to the foundation's research program.)

Through this all, I have learned to be bullish, pushy, and skeptical. Well, I started our skeptical, but this has proven that my care is my own responsibility, and easy answers just don’t fly. Most of all, I have learned to be informed.

I do have to be careful. Focusing too much on a disease makes you think you are the disease. And living my own mystery can be overwhelming.

So it’s time to shut down the computer, do a little yoga, and head to the lake for a walk. I’m not sure I would be doing any of those healthy things, though, if it weren’t for the research I have done that has pointed to their benefit. Perhaps, then, I have found at least some answers to my mystery.

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