First Do No Harm

While there hasn't been any specific progress in terms of treatment over the past few days C's primary oncologist, Dr. C, has kept it interesting by continuing keep us out of the loop in the midst of this complex, evolving situation.  It's just baffling to us.  I haven't written much about this but it's been a constant since we began working with him.  That's not really the right term, it's more like "since C began being his patient."  This guy is Dr. God incarnate, in the God-complex way.

We found out on Friday that he had decided that C's treatment should start with surgery, not chemo and radiation.  He made this decision himself and left a phone message Friday afternoon not so much letting us know, as including that info amongst the rest of the message.  We called back to try to find out what he was talking about and got no response.  We find out today he had also informed the nurse in charge of the trial (that we are still interested in having C participate in) that C would not be in the trial.  He told her that last week.

He told us that the opinion of the tumor board two weeks ago was no surgery.  Then yesterday he tells me that their opinion was surgery - that was his one apology, for getting that screwed up.

We have been consulting with Dr. M since days after C got the news of this diagnosis, and he has been a godsend, a lifeline for us to information about where we've found ourselves. Unfortunately he is a pediatric oncologist and cannot treat C, so we went to Dr. C for various reasons, mainly that the trial we were interested in was available at City of Hope, and that took us to Dr. C.

I will keep this short, but Dr. C is not interested in working with us as partners in this.  I have no idea how his other patients stand for this approach.  On the phone yesterday I told him that we need information to be able to make these complex decisions and he said, "This is how I work.  You can go elsewhere for treatment if you like."  We are trying to decide between two different approaches, surgery first or starting with chemo, two options for which there is not a definite answer, filled with hardcore impacts on C's health, and he has no interest in our opinion.

Clearly it's not a relationship that will last, and we are looking at our options.  Dr. M is giving us his normal, caring, detailed assistance with what to do now.  Our main concern is to get C started on treatment, which is long overdue.  That probably means we begin treatment under Dr. C's care, but we need to literally shove him in the direction we want to go, which is hard to do when you can barely get the guy on the phone.

So today we are attempting to get C moving towards the trial, which has a deadline this week or he misses that.  We have an appointment with a neurosurgeon this Wednesday to discuss that option, but we don't want to wait until then to initiate the trial - it might be too late.  So today is about pushing this pig up the hill.  Forcing C's oncologist to bend to our will, and get this train out of the station.

The other development is that C is feeling more ready to take in the details of this process.  The transition from healthy guy with your standard set of troubles to "the new normal" at ground zero is tough.  But he's now wanting more info, more control, more clarity that he is the final vote.  He is calling Dr. C today to let him know how things will be.  We have not ruled out surgery, but it will happen because C chooses it, not because Dr. C does.