Monday, January 26, 2009

Not Going Back There

I had an appointment with a potential new oncologist this afternoon. The appointment was scheduled for 3:00, so of course I was supposed to show up at 2:30. It did not go well and I will not be pursuing treatment at the University of Maryland Greenbaum Cancer Center.

At about noon today, I received a call from a doctor, who turned out to be the fellow for the oncologist I was scheduled to see. He was calling me to see why I was coming to see the doctor today. I asked if he had read my file, including the information from NCI. He said he had, but then proceeded to say some things that led me to doubt him. I found myself in the weird position of explaining to a doctor what my diagnosis was, on which data that diagnosis was based, and why I felt that this particular specialty could help me. The fellow finally agreed that I should come in this afternoon. I was incensed when I got off the phone. I called Captain Obvious to share my frustrations, then called NCI to ask for help. The contact nurse there, who has always been respectful and intelligent, proceeded to calmly explain to me all the things that I had explained to the UMD fellow, and even offered to talk to him to explain these things herself. I called UMD, thinking that I would ask to speak to the fellow again, but the woman on the switchboard (who had made the call to me earlier) was quite friendly and told me to ignore the fellow and just come see the doctor. So, we were there at 2:30.

My sweet MIL was there also, as agreed upon. She stays with Captain Adorable in the waiting room while Captain Obvious and I go in to see the doctor. This makes me happy because it minimizes the time I am away from Captain Adorable, and I think it makes her happy because it means she gets to have an hour or so with her grandson. Immediately after I signed in, I was told that we were not allowed to have a child in the waiting room. This pissed me off. After all, I had been there before, to see a different oncologist and I had brought Captain Adorable with me and he had stayed in the waiting room with my sweet MIL the entire time. Suddenly changing the rules on me like this did not make me happy. When Captain Obvious asked what then we could do, the person had no suggestions. We said we'd wait in the lobby and asked if someone could come get us and she said no. Unbelievable to me. Why should we all wait for 45 minutes to an hour, separated by 30 feet and a wall, separate from each other? Why can we not all wait as a family group?

I cooperated in the end and indeed waited for 45 minutes before being seen by the doctor. Yes, the fellow finally came to get me at 3:45 for a 3:00 appointment (and, keep in mind, I had arrived at 2:30). He asked if we'd been waiting long and I responded, "yes, 45 minutes." He laughed and said that was normal. I've been to see oncologists at 3 hospitals and a research center in 2 states. While one often has to wait, 45 minutes should not be considered normal! Absolutely insulting to your patients, in my opinion.

We (the fellow, Cat. Obvious, and I) went into an exam room, where the fellow proceeded to spend, oh 40 minutes, explaining to me that NCI is wrong and that I have lung cancer. I of course defended my position (which is that I have CUP, not just colon cancer in my lungs with no identifiable primary, but actually true CUP, meaning that the cancer is not identified as lung or colon in origin, but no one knows where the primary was/is). The fellow was finally seeming to come around to my way of thinking (especially once he found out that his pathology department had made their determination based on slightly less data than NCI). Then he examined me (listened to my lungs and belly, poked around my back and belly, nothing bad but not a bundle of fun). Then he went and talked to the oncologist for 15 minutes.

When they came back, the oncologist again spent his time telling me how I have lung cancer and why NCI could be wrong...I did not say much to him because by that time I was disgusted with the place and had decided I was not coming back. He ended the appoinment by saying that he would have to have a conference call with the doctors at NCI and he would make a determination based on that call and would let me know what his recommendation was. The thought that went through my mind was "Why the hell didn't you do that before I arrived today? Because this whole appointment seems like a waste of time."

I tried to communicate to these doctors how not being allowed to have my child with me in the waiting room affected me and my life (and could affect my ability to come in for a visit, should I have no one to care for my son). They listened but did not hear and simply and patronizingly explained to me that children, while they are cute and everyone loves them, present a dangerous risk to bone marrow transplant patients. I suggested that perhaps patients who are naturopathic should have a separate waiting room if the danger is that great...

Anyhow, yeah, I'm not going back there. Looks like JHH is once again in the running as an option. Hoping to get in to see an oncologist there who did her fellowship at NCI and has already contacted the NCI doctors about my case (without even having an official appointment, may I add in her favor). Here's fingers crossed that I can find a doctor before we leave for Costa Rica on Feb. 4.


Amina said...

Gee whiz. The idea that you have to go through all this time-wasting on top of what you're already dealing with defies belief. And to be getting the feeling (I read between the lines)that these doctors you saw treat you as a list of symptoms rather than a human woman must drive you to distraction.
You can only follow you instinct and choose a doctor who touches your soul.
love as ever

mamefati said...

Absolutely ridiculous and disgusting.

Much good energy being sent to you for a much easier time coming.

Anonymous said...

I am glad you don't accept this haphazard and lackadaisical slapstick kind of behavior on the part of the medical establishment. May you find a doctor who empowers you, rather than defeats and depletes you. Go, girl!