Wednesday, September 24, 2008

I just can't have blind faith in my doctors.

I'm what is called a highly motivated patient. Because of my age, 40, doctors choose to treat invasive lobular carcinoma in a very aggressive way. Radical mastectomies, heavy rounds of chemo, radiation - all of these are being used to bombard the cancer and beat it into submission.

One of the most frightening aspects of having breast cancer is that we have to trust our doctors. Pure strangers, and they hold our lives in their hands. These people guide the life and death decisions that I'm making right now. And I can't trust them blindly.

Why? They're human and can make mistakes. Case in point. My tumor was missed by the mammogram, sonogram, and MRI - the very machine that was used to help us make a decision about the left side. My MRI on the right breast, my "bad" breast, came back normal. It wasn't normal. And it wasn't the machine's fault. It was the technician's who though they were making an accurate reading of what they saw. They weren't.

Luckily, we chose to do a double mastectomy regardless of the MRI results. It's a good thing we did. Hidden under the mess of small pockets of calcification (Stage 1) was a 4.5 cm tumor (stage 2) that was throwing out tentacles. For this reason, I do not have clean margins to the skin level.

This 4.5 cm tumor was not visible on any test.

That means it was only found when a chunk of my right breast hit the pathology table.

My other point goes to the heart of me. I've always been a cup half full kinda person. I'm not right now. I thought the results of my PET scan would elevate me mentally. It has a little but not much. Why? I think lurking in the back of my head is the worry that I need answers that my doctors can't give me. They are reassuring me that I'll be here 5 years from now, but not telling me that I won't die from this. It's not their fault and I do understand their position.

I don't want to "battle" this disease for the rest of my life. I want it gone and then I want to move on. I have kids to raise, a husband to adore, and a life to live. I want to write my book, I want to go to Hawaii, I want to see my grandchildren. And my doctors can't tell me if I'll be able to do that.

I'm facing chemo starting next week. My kids and husband will see me at my very lowest and I need to be strong for them and me. It shapes you when you see pain on this level when you're a child. My Jackie is very careful with me now, afraid she'll hurt me if she touches me. It brings tears to my eyes to have Steffie kiss my arm instead of throwing her arms around me. It's too painful to hug my kids.

One day at a time. I keep telling myself that. One day at a time. I'm trying but I'm scared. I'm very scared.

My mother's marker test came back positive last week. That means there is cancer somewhere in her body. The doctors are trying to find it with bone scans and PET scans. PET is tomorrow, bone scan was today.

This is far too much for one family to bear.

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