Wednesday, April 23, 2008

please don't mess with my head

Steve and I are truly overwhelmed and grateful for all the good wishes and prayers that have been left on this blog and in my e-mail inbox. Thank you so much. They mean a great deal to us, and we feel so loved.

I do have to say this, however:

I appreciate your encouragement and your anger. And I also appreciate any research you are doing on my behalf. God knows, I don't have time to do it all myself. But if you have medical input on my case — particularly of the nature that second-guesses my oncologists' advice — please post your name and e-mail address (so I can contact you for further information) and the sources of your information — including links to articles if you have them. Better yet, send me a private e-mail (to the address in my profile) so we can have a real discussion of my medical options.

I really do want to make sure we've examined all avenues of treatment, but I cannot possibly have any credibility with the doctor if I go in saying, "Well, an anonymous tipster on my blog says XYZ might be better than what you're suggesting. What do you think?" Seriously, the suggestions that my doctors don't know what they're doing messes with my head, and I don't need that right now. Dr. T. and Dr. S. are the main sarcoma experts at the University of Minnesota's Cancer Center, which is among the leading research and treatment centers for sarcomas. (On a related note, I will be among the subjects of discussion tomorrow at a "sarcoma conference" being held here in Minneapolis. Dr. S. plans to ask for additional input in my case.)

I do want to fight this with all my might, and I do want to be as well-informed as I can. But please realize that there's not much I can do with anonymous suggestions with no attributions or sources I can pursue. Thank you for your understanding.


Anonymous said...

Yeah, I thought later, the doc probably does things like leaving a message a la "I have a report" to keep anyone from getting upset at him. Same reason for the non-emotional, seemingly callous way many physicians seem to go about things nowadays. But man ... what I (or most all of us, I'd guess) would do for a doc with a bedside manner despite the greater stresses on the profession.

p.s.: I still don't think this excuses a doc telling someone that it's OK to drive after you've been pumped full of Percodan for hours. Well, it might be excused if the doc could give one a note telling police that you have an MD's permission to drive like a maniac.

Anonymous said...

Ray, I agree with you completely. In fact, I was going to say that on the other thread.

I met Dr. T., and he's definately competent in his knowledge of sarcomas. No doubt about it.

But I think bedside manner as much more vital than people realize. Especially with something like cancer, where even the experts are knocked over by cancer's mysterious and elusiveness, and stubborn refusal to be cured.

My own onchologist, Dr Ey, has a crappy bedside manner. I think it's an issue that needs to be addressed much more than it is. The new rules, where medical students need to have interpersonal training, will hopefully be emphasized especially toward aspiring onchologists. (Is that an oxi-moron?)

Anonymous said...

As one of the bloggers who expressed frustration at your doctors, I sincerely apologize for "messing with your head". While this was not my intent, I can understand now why this is not what you needed, nor did I have enough information to make such a judgment. Please accept my apologies.