Yesterday was chemo day, again, and everything went smoothly. I'm feeling surprisingly well this morning. Maybe my body is getting a little bit used to the drugs?
We continue to have mixed feelings about my medical oncologist. He is nice enough and seems to have a basic understanding of IBC and the standard course of treatment for it, but does not seem to have cutting edge knowledge. He was still unsure about what is going on under my arm. I told him I had found one picture on the Internet that looked exactly like what I was demonstrating and that the caption underneath said it was caused by axillary venous thrombosis (small blood clots in the veins under your arm) caused by the breast cancer. I coulnd't find any other information about this. After I told him this he said we would order an ultrasound. I also talked to him about talking with the doctor from the IBC clinic in Houston and his suggestion that we have a follow up MRI now that I'm about halfway through my chemo treatment. He agreed to this also. We talked to him about drawing blood for tumor markers and following those. He said he wouldn't really use them to inform treatment decisions as their peaking and lowering can lag behind what is actually happening in my body, but did agree to have them drawn. The visit at this point had lasted maybe 15 minutes. He then told us he was sorry, but he had to go. It wouldn't be fair to his other patients to stay longer. This seems to be the pattern of our visits. Does it make sense that we're a bit uneasy with him? I don't like the feeling of always being the one to bring up treatment or diagnostic ideas. I want him to do that and be able to explain them to me.
However, on the more positive side, after we left from getting my chemo, the doctor from the IBC clinic in Tuscon sent an email and had her nurse call us. She would be very happy to be involved in my care. We are going up to Tuscon on Monday to see her (she is a surgical oncologist) and another doctor she works with who is a medical oncologist. We've researched both of them on the web and they both seem very knowledgeable in the treatment of IBC.
After that, later in the evening, a medical oncologist here in Phoenix that has come highly recommended to us called us personally. This was around 6:30 in the evening. He knew the doctors from up in Tuscon and was even familiar with what treatment protocol they might want to put me on. He said he would be glad to take me on as a patient, but wants to let the doctors in Tuscon lead the way as to whether they want to act as my primary doctors and provide care or if he would be my primary doctor and they would act in a more consultative role. All in all, I went to bed feeling much calmer and feel we are moving in the right direction. The medical oncologist that called me last evening said, "This is what it is, but we'll do everything we can to beat it." I liked that.
That's it for now!
Love you all tons!