Story keeps changing

I absolutely love my surgeon at Moffitt. Dr. Khakpour is so positive and encouraging. She took the time to explain everything. John liked her too, mostly because when he tried to joke with her she laughed and played along. I was impressed that she had already studied my biopsy report, my lab results and the ultra-sound films I brought with me. She said it looks like I’m a good candidate for a lumpectomy and intrabeam radiation, where they put the radiation right into the open breast during surgery. It’s so effective no follow-up treatments are needed. That’s what I want, one shot and done. She will present my case to Moffitt’s tumor board on Thursday. They must approve any course of treatment before it can be scheduled. So now I wait some more, knowing that all the while the cancer is growing inside of me. Thursday, 2/21/13
Just got off the phone with Kathy, Dr. Khakpour’s nurse. She’s very sweet and caring. The tumor board decided they need more tests before they can approve a course of treatment. They think the cancer may be too big for lumpectomy. They want more mammograms, ultra sound of lymph nodes and a breast MRI. The next appointment when they can do it all in one day, so we don’t have to make multiple trips to Tampa, is a whole week away. I am in shock. I feel like I’m right back where I was two weeks ago – everything on hold, nothing decided. I hate this. I feel like I’m just sitting here watching my tumor grow for another whole week. I thought we had a plan. Now it’s all uncertain again. I feel like grabbing a knife and gouging this lump out myself. All of this uncertainty and delay is making me crazy. (I started to say “killing me,” but that’s too close to the truth.) Wednesday, 2/27/13 Testing day is finally here. We had to stay the night in Tampa because my appointments start so early. These tests are being done at Moffitt’s International Center. It’s a nice place and the people are really kind and helpful. At least here there are not so many patients waiting and things are moving along faster. I don’t know why, but the mammogram order called for images of both sides. The MRI was really scary since I’m claustrophobic, but turns out they do it facedown which is easier. Sure hope all the results will get to the tumor board by tomorrow’s meeting so we can get on with scheduling surgery. Friday, 3/1/13 No word from the tumor board so I called Dr. Khakpour’s nurse and left messages. Just before 5 p.m. I got a call back from another nurse telling me that Kathy is out of town until Monday. Here we go again – another long weekend of waiting and wondering and watching cancer grow. I feel like the beast has the upper hand right now. In spite of all that, I have an amazing peace about the whole thing. I have simply given it to God and I refuse to fret. Monday, 3/4/13 Nurse Kathy called and apologized for being out of communication. She said the tumor board (I’m really starting to hate these people and I don’t even know them) decided to order three new outpatient biopsy surgeries, one on each breast and one on the nodes. They suspect the presence of satellite lumps on the right and possibly one on the left. It took me a moment to comprehend – three lumps, maybe more, and they’re on both sides? Why not just take the breasts off? Why do more biopsies? This is the unending nightmare.