Sunday, November 16, 2008

Every Team Needs A Captain

One of the many things I am grateful for, this Thanksgiving season and every day, is the relationship I have with my oncologist, Dr. Francis Forte from Englewood, New Jersey. I met Dr. Forte in the Fall of 2004. My previous oncologist stopped accepting Aetna and I had to find someone new. Finding a new cancer doctor when you have been diagnosed with an extremely rare disease is like looking for a parent. The fit has to be a good one. I met an amazing woman at my support group who spoke of her oncologist as though he were a member of her family. Phyllis and I met toward the end of her battle with breast cancer, but she made an incredible impact on me. (To this day I sometimes ask myself, “What would Phyllis do?”) By the time Phyllis was diagnosed with breast cancer, she had already broken a bone from metastatic disease. Most thought that she has a very short time to live. Under the care of Dr. Forte she lived for 6 ½ more years. I consider Dr. Forte to be a gift from Phyllis.

In October of 2006, when 10 nodules were found in both of my lungs, I had part of my left lung removed (a lung resection). When I was told that my cancer has spread and was now officially incurable - Dr. Forte understood the shock, fear and panic that took over me. But he went to work. He said that we wanted me to go to Memorial Sloan Kettering Cancer Center in New York to confirm the diagnosis. And he asked me for a little time to research how best to treat me. When he called a few days later to say that ACCB doesn’t respond to chemotherapy, he described the research that I later found in my own search for answers. Because it grows so slowly, by the time the cancer cells divide and grow, any presence of chemotherapy has already left the body. Dr. Forte said that if my tumors grew too much, additional surgery would be the next step, although we didn’t think that this would be necessary for many years, if at all.

To prepare for my consultation at Sloan, I made a binder of my research and I gave a copy to Dr. Forte. Since then we have become partners, in a sense. He’s still the Captain. I don’t make a move without his blessing. But he understands my need to understand my cancer – however little information there is about it. He read the binder, and with his 40+ years of experience, explains things to me that help me to feel in control.

When I learned 6 months ago that my tumors were growing, I was devastated. I was doing everything that Sloan recommended, eating right, exercising, taking alternative treatments and supplements recommended by my biochemist and nutritionist, and was convinced that the tumors were at bay. Dr. Forte saw my face as I looked at the CT report, and immediately said, “Didn’t you see something on TV about a technique that burns the tumors out one by one?” Thus began my voyage into the land of RFA.

Having snapped me back into Take Action mode, I did more research, this time on alternative cancer treatments. I made another binder and again, I gave a copy to Dr. Forte. This time the binder contained research that was pretty far out of the box. I thought that I’d have to make a pitch for his approval to try some of the treatments. Instead, he did not object to anything, as long as it didn’t hurt me or damage my immune system. I found myself saying, “Are you sure?”

Oncology is the science of cancer drugs. I can’t take cancer drugs. Dr. Forte could have done what some doctors have done to me. He could have wished me the best of luck. But instead he develops strategies with me. He listens. He asks me how things are going in the rest of my life. He tells me that I'm doing a good job. A few months ago he said, “I have learned a lot from you. I only hope that I can be of some benefit to you too.” Can you imagine a doctor saying that to a patient? Who could ask for a better Captain?




  1. Kathy,

    I had a question for you... have you suffered weight loss previous to the diagnosis of the AML?

    Keep your chin up! We're rooting for you out here!


  2. Rach,

    No I did not have weight loss prior to my AML diagnosis. I had swollen gums and killer night sweats, which I interpreted as hot flashes. Thanks for your question and your great support!



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