1987 too – fear of recurrence, check-ups and doctors

The last chemotherapy treatment should be a time of relief and joy, but when I think about that year now, I only remember fear. My last chemo was in late February, meaning my first check-up should have been in May. Three months is a long time when you wake up every day scouring your body for any little sign that the cancer might be back. I know that you are thinking how stupid that sounds. I had just finished chemo, and I was already thinking the cancer was back in some way that I could tell. Well, let's look at all the illogical things that I had already heard in the previous six months. 1. The lump was not cancer. 2. I was too young to get breast cancer. 3. It was very early, and I was the perfect candidate for a lumpectomy and radiation. 4. There was no way I would need chemotherapy. So far cancer had been anything but logical. And my life was driven by fear, not by logic. Now studies show that the No. 1 issue for survivors is fear of recurrence. Really, duh. But the reason that's important is because it helps the doctors understand why we are so irrational. It's the reason I didn't make it three months until my check up. Fear or a strange ache or pain drove me into the doctor before my scheduled check-ups for more than a year. My first call to the doctor was a mere two weeks after my last chemo when I had a strange ache in my elbow. Yes, elbow. I finally called my nurse Becky and told her that my elbow was really sore and I was concerned the cancer had come back in my elbow. She didn't laugh -- to her credit. First she said it was really unusual for cancer to come back this quickly, and it was even more unusual for cancer to come back in a joint. Then she asked, "Did you try some aspirin?" I told her I had. She asked if I it had helped. I had to think a minute. It actually had helped a little, I told her. And with a perfectly straight voice filled with compassion, she said to me. "That's a good sign because cancer doesn't usually respond to aspirin." How do these people deal with us? I will never know. But I do know that there is a special place in heaven for medical professionals who choose oncology. There are so many other options in medicine and they chose us – who are often not very nice to them in our fear. I recall my oncologist asking if I wanted to be part of a national panel on the CA125 blood test for ovarian markers. I was so honored. I thought he had chosen me because I was so special and because he knew I ordered one every time I came in. When I asked him, he said, "Well I thought if you were on this panel and you understood how unreliable this test is for breast cancer, you might stop ordering it." When I was looking for things I had written I found the following letter that I wrote myoncologist one year. I never sent it but I think it speaks volumes to the doctor-patient relationship. Dear Doctor We are meeting for the first time today. I arrived with a chart, a sheaf of papers detailing a mysterious growth in this body of mine. I can hear you remove the chart outside the exam room where I sit on a chair waiting tensely. I sense you reading through the pages collected on me, and I stare at the door, listening anxiously for some clue to my future. Do you see the real me in that manila file? I want you to look at me. See that this nasty mass of cells lives in a body full of life, a body that has loved life, a body that wants to live. I wish I could prepare my own chart. I would have chosen a colored file and added some art. I would have included some of my writing and maybe a photo of me with my infant daughter to help you see how many reasons I have to live. I would have tried to be witty and make you laugh as you read, thinking, "Wow, this is an interesting person. This one I want to save." I want you to see me as special. I want to be the one who motivates you to new heights of determination to find a way to beat the nasty cells into submission. Who are you? Your choice in life was medical school. Are you glad? Did you do well? I don't have your file. More important, since I teach college, I know that just holding a degree doesn't mean you are smart or kind. Did you make A's or were you a C student? Are you happy in your life? Did you fight with your spouse this morning and are you now thinking of ways to make up instead focusing on me? Was the person you saw just before me more compelling? Are you thinking of her and her nasty cells instead of mine? How do you do this all day? We have never met and yet you hold my life in your hands. I am panicked that you won't care enough about me. You'll miss something critical, and I will die. I have already begun to hear the horror stories about doctors who did or said something insensitive or stupid. I am trying to think of what I will say first, remembering that I come on strong. But all the books say that is good -- a person who takes charge does best. I hope you agree. The door opens. Our eyes meet for the first time, and I try to hold your gaze. I want my eyes to say it all. Please like me. Please love me. Please want me to live more than anything you have ever wanted in your whole life.