The MRI revealed no more then we already knew. As I continued with the testing and the process, Mick was continually with me and I let him do the talking and ask the questions. I determined then that like everything else in my life, I needed a Project Manager. He agreed to take on the job and I became just the patient who was more interesting in running my life and my business instead of worrying about doing the research and making notes about what pills to take when, etc.
When I went for the PET scan, the lab tech gave me a whole run down about the procedure and kept asking if I had any questions while the radioactive dye was dripping into my system. He seemed so disappointed that I didn’t ask questions. I finally put my book down, looked him in the eye, and said, “Oh, yes, my husband wants to know if I will light up tonight.” The poor tech ran across the room to assure me that I would be fine. I guess he lacked a sense of humor.
The next step was to find a surgeon. Even though the chemo would take months, I first needed a surgeon to put a port in my body to accept the chemo. Of course, someone told me not to get a port that I would be open for infection. And someone else told me not getting a port caused permanent nerve damage to her arm from all the infusions.
“Speak to my Project Manager” became my mantra. If there was one thing I was learning, was that everyone’s breast cancer was not the same and that doctors had different approaches. My job was not to worry and get well.
The appointment with the next doctor was like visiting the land of the ghouls. When I made the appointment and stated that I wanted a lumpectomy, I was asked are you sure you want a lumpectomy and not a mastectomy?
The doctor’s assistant took a history. Her eyes lit up when I answered in the affirmative to being an Ashkenazi Jew. She treated us like two babes in the wood being led to slaughter. She left us alone for two minutes, the only time we were alone in this visit that took well over an hour.
The doctor then came in and suggested I get two mastectomies and have my ovaries and uterus removed. As she was rambling on about the chances of my being positive for BRCA 1, a hereditary breast and ovarian cancer syndrome (HBOC), caused by a mutation. Those that have this mutation are at a much higher risk for breast cancer, ovarian cancer, prostate cancer and pancreatic cancer.)
Then there was a quiet knock on the door and the genetic counselor entered the room. “Who do we have here?” She explained about BRAC 1 and BRAC 2 and wanted me to test for both. The BRAC 2 is much rarer and the percentage of people having it is minimal. I agreed to be tested for the BRAC 1. When she pushed and told me that I should do it for my children, I snapped that it wouldn’t be necessary. (If she had read my history she would have seen that my children are adopted.)
She encouraged questions and kept saying “Oh, what a good question. Do you have any more questions?”
I couldn’t wait to get out of there and felt like I needed to go home and immediately take a shower.
Needless to say, this was NOT the doctor I was planning on using.
The next doctor was all lightness and cheerful. She winked and smiled and put us at ease. I was told I needed a port for the chemo so we decided to engage her for the port.
I went to the hospital and the first doctor I saw that morning was the anesthesiologist. I explained once again that I needed very light anesthesia or they would be keeping me overnight. He was pleasant and agreeable and in general I was pleased with the staff at that hospital.
After they put the port in, they put me in a holding room. I was anxious to leave but my entreaties were answered with I couldn’t go until a dressing room was freed up. As I was in a curtained enclosure, I suggested that they bring me my clothing and let me dress there.
The answer was a firm “no.”
After an hour they let me leave.
Mick told me that the doctor had come out and assured him that she had looked at the x-rays and that everything was fine. They insisted that I be wheeled to the curb and that Mick bring the car to the door.
When Mick returned with the car, I got in and suggested he drive about 30 feet, then I quickly changed places with him and drove off to our next appointment…one that for a change did not concern my cancer.
An hour later I got a call from a nurse that sounded panicked. “You must come back for an x-ray immediately.” “Why,” I asked. “I was told one was taken.” She put me on hold and again said I must come back ASAP for an x-ray. I told her that I had an appointment the next morning for another test and that I would have it done then. Five minutes later I received another call from another nurse telling me I must come back. I told her the same thing. She relented and said that all I had to do was go to the desk, and they would send me back immediately for an x-ray.
Not so. We had to give a million explanations before I was ushered back for the x-ray.
The list of doctors that I would not trust was getting longer by the day.
to be continued