Sunday 3/13/11

I don’t even know how to begin talking about the week I’ve just had and I’m not in the best place emotionally.  I came down to NC last weekend because I’ve got a break in my work.  The first day here I met a woman whose husband is an MRI radiologist. She told me to have Ron bring down my films and her husband would be happy to read them.  When I dropped them off I met him – great guy – we talked about what I have been going through, my disenchantment with the cancer machine and medical protocol etc…  He seemed to “get it” and assured me that he works with some great Oncologist’s here who believe in complimentary treatments to chemo – such as dietary changes, supplements, etc…

On Thursday he called me and said that if I was willing, he really wanted me to see a friend of his.  He said I clearly have 3 lymph nodes that are still present and was concerned that if I let them go they would invade the pectoral muscle and then I’d be looking at even more difficult surgery.  He set me up with Dr.Graham for Friday afternoon.

Dr Graham was a bucket of cold water!  He didn’t hold back any punches and basically told me that it appears from a clinical perspective that my cancer has morphed into IBD – inflammatory breast disease. He also went on to say that it appears that I should have continued my chemo for at least 4 more weeks. According to current studies, I had received the right type of treatment, but not long enough. His studies showed that for my type of “aggressive” cancer I should have received the herceptin/taxol for 12 weeks rather than 8, and that by stopping the treatment, it allowed the cancer to still be strong enough to regenerate into something else. He also told me that my cancer is inoperable and that my window of opportunity for surgery was closed 2 weeks after my last taxol treatment “if there was even a window.”  In fact surgery would have been the worst thing I could have done.

I went home and looked up IBD…oh boy not good.  Only 2% -5% of women get this kind of cancer as it is very rare – Not a great cure rate. Ron and I sat with that all weekend.  He went back to VA on Sunday night and I stayed in NC.  We decided that I would transfer my life and my treatment to NC as Dr. Graham has accepted me as his patient.  I feel like he is someone who will leave no stone unturned although his bedside manner is pretty technical. Oddly enough I feel safe with him – maybe because he seems almost like a “rainman" - you can see him processing and computing everything he knows.  He was trained at the Mayo and did his internship and a fellowship at UNC and Duke.  Pretty dang smart guy.

On Monday Ron and I talked.  Instead of thinking that the Universe had forsaken me, he has decided that instead it is taking amazing care of me.  From his perspective there was something in me that really pushed against having any surgery.  Then I decide to take a one week hiatus in NC, and on the first day I walk into my son’s fitness studio and meet a woman who’s husband is an MRI radiologist  who happens to be friends with one of the top oncologist’s in the triangle area who is now willing to take me on as his patient.  What are the odds???  When he put it that way, I had to laugh.  I think he is right.  During the week I also met a woman who really resonated with the quirky side of me.  She is a yoga teacher, loves metaphysical stuff, and lives life out loud!  It’s like rediscovering a piece of me that got buried while I lived and worked the consultant/corporate lifestyle.

The DC metro area is so large and so transient that I always felt like a number on the bell curve – the treatment protocol that I was on works for 80% - 90% of the population but unfortunately it appears that I am that 10% -20% (or now, 2% - 5%).  Given the world I work in I get the statistical piece.  Medical protocol may lose 10% - 20% of the women treated, but they saved 80%- 90% so they are successful.  Not very nice but it is reality.

Hopefully my odds are not that bad.  I feel like I’ve found a community and a doctor that looks at me as a person and not as a statistic.  My son and husband tell me this is just the southern way – whatever I feel like I have a fighting chance here.