Wednesday, January 7, 2009

Cute New Hat

Not too much to report today, as I am sad about Neut going tomorrow morning. I did get a cute new hat in the mail today, though! It's called a cupcake hat but it's not costumey at all, in spite of its reminiscent appearance to a cupcake. I also received some lovely roses in the mail, and they certainly brighten the dreary rainy day we had here today (and yesterday). it's quite windy outside right now.

I have to call and report the status of my port tomorrow to my oncologist's nurse-practitioner, and I'm not too sure what to say. It seems much better than Monday, but I would have expected a bit more improvement today. I want to avoid going into the hospital for IV antibiotics if I can, but not at the expense of my health or the port, obviously. I will sleep on it and try to run by tomorrow after work for someone to take a look at it, perhaps let the medical professionals make the call (since that's what they do).

I called Memorial Sloan-Kettering in NY today about a second opinion and got a bad seed on the phone. She basically told me that I had to have cancer and need chemo to get treated there, since she didn't understand High Grade ESS as the term I used, and when I clued her in that that is cancer and I was in chemo she told me the dr. wouldn't see me if I was already being treated. Well, I was quite upset after she basically roadblocked me at every turn, eventually ending the call with "my dr. was going call their drs." I called my mom to vent I was so mad, and she got on the horn, and don't you know soon I was talking the the supervisor and have a plan of action to get an appointment there with a compatible dr. to my specific files/diagnosis (already being faxed up) after my next CT scan (which I should have during the week of Feb 9th). So, I feel better about that, after a bad start to the experience. I do look forward to having the records reviewed by another doc, even though I have full confidence in my team. It makes sense to get what insurance will provide, and there is a sarcoma center at Sloan-Kettering but not one at MCV (where I go) so paying attention to/treating this rare type of cancer is right up their alley, and the best option for me, I feel. I would still get treated at MCV, regardless of the outcome, since My doc tells me they have a good reciprocal relationship and do this somewhat regularly. More when I find it out!

1 comment:

  1. I came to your site quite by accident as I was looking for a friends memorial on V.M. I have to say I read every detail from the very start and felt very guilty for reading all these so personal feelings of this young women and yourself, I felt as tho I was reading a great novel (which in some ways is true) that I could not put down. I'm so very sorry for what you and your family has had to go through. I am sure that your wife is glad that you are continuing this story that she so bravely started to tell. God Bless you...........DEE