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The benefits of being a “difficult patient”

Posted Jun 27 2013 12:57pm
June 27, 2013 - Posted by tamilb

Bernie Siegel, here with his furry companions, was my inspiration for my book From Incurable to Incredible and wrote the foreword to my book.

I remember reading a line in Bernie Siegel’s wonderful book, Love, Medicine and Miracles. He talked about how the patients he saw who did the best were not the “good patients,” who smiled and acquiesced to everything. The “exceptional cancer patients,” as he called them, were the complainers; the ones who asked good questions, the ones, who frankly, were pains in the ass. They were the ones who made it despite a terrible prognosis.

These patients Bernie describes are “self-reliant and seek solutions rather than slip into depression. They interpret problems as re-directions.”

It hasn’t been easy, but I’ve learned to be one of those pain-in-the-ass patients. I’m nice about it, don’t get me wrong. But I know that no one has as big of an investment in keeping me alive and well than me. I may not hold a medical degree, but I’ve learned a lot about breast cancer throughout my 11-year journey. And I know my body.

I remember going to see a local alternative practitioner, who was trying to convince me to do bio-identical hormones, a scary prospect to me since I had estrogen/progesterone-fed cancer. I refused. He called me the “most non-compliant patient” he’d ever seen. I took that as a compliment.

If you lead a corporation, you hire good people with expertise to do their jobs. But you’re still the boss. That’s how I try to look at my medical experience. I have the right to hire and fire doctors. If a doctor gives up and acts like he/she doesn’t care, they’re off my payroll. I will look for someone who won’t give up on me and has new ideas. And I won’t just listen to them and follow blindly. I’ll do the research myself, consult with other people, and make an educated decision. The buck stops here, as they say.

I am a strong proponent of getting second, third, fourth opinions. I’ve had plenty. I can understand why people want to stick with whatever their doctor says. It takes a lot of work, and it can be extremely confusing to sort out different opinions and decipher which one is the best. For sure, some people luck out and have amazing doctors right out of the gate  who are right on target. But, speaking for myself, I need to be sure with something as important as my life. It’s a different world when you have metastatic cancer. The stakes are too high. Sadly, I’ve had friends die who absolutely trusted their doctors and refused to get a second opinion until it was too late.

I’m writing a chapter for a book by my friend Mark Roby, a naturopath and physician’s assistant who is beating the odds of a rare liver cancer. He talks about having contingency plans, at least three, in your pocket at all times. You need to stay ahead of the game, so when you hear a scan is bad, you have some options you’ve already checked out. Most doctors don’t do this for you. They are busy with lots of other patients and they aren’t invested in your life as much as you.

One of my metastatic friends aptly describes her experience as hitchhiking to the next treatment. I’m always on the lookout for new treatments and ways to boost my health in body, mind and spirit. I’m on the drug Afinitor, which only was FDA-approved last summer. There is another targeted drug for my type of cancer that has received breakthrough designation by the FDA and is on its final leg of its clinical trial.

Last night I joined my husband and friends, dancing away at a B52s and Go Gos concert. According to statistics, I only had a about a 20 percent chance of being alive, much less active today. My daughter is entering high school this coming school year, and I am optimistic that I’ll be here to celebrate her graduation and throughout her college years. Mike and I even talk about where we might live when we become empty nesters. I will keep doing whatever it takes because life is too precious to leave up to someone else.

 

 

This entry was posted on Thursday, June 27th, 2013 at 12:57 PM and is filed under , , , , , . You can follow any responses to this entry through the feed. You can , or from your own site.
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